This is a companion article to “The Stages of Change: Gluten-Free Edition.” I started out writing Gluten-Free Success, but a quote from Vishwas Chavan sent me down a rabbit hole about how we process and deal with change. Thank you for riding along with me on this trip.

Al Klapperich

How can we even begin to think about success when we're wondering how to survive breakfast?

If you hadn't heard of Tony Robbins, he's is a motivational speaker, author, and famous life coach. I find his formula for success straightforward and commonsensical. I like that. I'm all about being sensibly gluten-free.

While it may happen to some, most people don't blindly stumble into success - particularly with something significant like a lifestyle change. It usually requires some conscious effort - "massive action" as Mr. Robbins calls it.

There are many definitions of success, but the best one is the one you've created for yourself. Success is unique - as individual as a fingerprint. One person’s success may be another person’s failure. Whether a newbie or a pro at the gluten-free lifestyle, ask yourself, "What does my success look like?" Let your answer be your guide.

If you've been suffering from an undiagnosed gluten-related disorder, you probably know your outcome already.

“I want to recapture my health and start a new life.”

An excellent long-term success goal, but don't forget to develop a roadmap - a plan to get there.

In "Springboard: Launching Your Personal Search for Success," G. Richard Shell, says, “success is not a static, one-and-done process. It’s dynamic. If you stay in motion, learn as you go, and remain open to the insights you gain on the journey, good things often follow.”

Gluten-free success may be different depending on the day, the hour, or even by the minute. That split moment decision to pass up that piece of gluten-filled birthday cake, the time spent learning what gluten is, or becoming a label reader and finding hidden gluten, helping someone in the gluten-free aisle at the grocery store are all great examples of success. On the surface, some of them might seem insignificant to us, but if we examine them closely, they are important milestones. Those successes add up and contribute to our long-term success goal.

It’s the little details that are vital. Little things make big things happen

— Coach John Wooden

Know your motivation

Motiviation is "The Why You Do it". That little voice inside you - sometimes whispering - other times SCREAMING that you can do it. Knowing what pushes you forward enables you to be more effective in attaining your success. For many, the motivation is a better life without the constant pain and suffering. For some, it's centered around loved ones - having the ability to fully present for them. For others, it's the opportunity to help others. Spend some time figuring out what gets your mojo working...and keep working it.

Transitioning to the gluten-free lifestyle is filled with numerous distractions; things that will pull you into the weeds. Friends and family members who offer gluten-filled foods, "Donut Day" at work, birthday celebrations, family gatherings, holiday parties. These are just a few events where temptation is present.

Enter stage left - discipline. Discipline is "The What You Do." It's the ability to analyze a situation and make corrections in your behavior. Discipline keeps you on the "straight and narrow"; preventing you from eating that [gluten-filled] donut or giving into friends and family members' offerings. Motivation and discipline work together. When the motivational inspiration wanes, discipline swoops in to save the day.

It's true, you will experience low-motivational days. Probably more than you want, but this is normal. Expect it and prepare for it. Mental preparation will help get you through; stay positive. By focusing on those small (minute-by-minute, day-by-day) successes, you will help raise your motivational energy levels.

There will be obstacles. There will be doubters. There will be mistakes. But with hard work, there are no limits.

—Michael Phelps

Take Massive Action

Making a lifestyle change is no small feat. You're re-wiring years [decades] of behaviors and habits. Unlearning your old way of life and replacing it with a brand new one requires a lot of hard work, dedication, and commitment. You've probably noticed the use of the word "lifestyle" instead of "diet." Changing what you eat is only one component. This change will affect every facet of your life from here on out. Convenience – gone. Care-free dining – adios. The joy of family gatherings - replaced with dread and worry. Things that took little or no thought - now rivals the logistics of a Mars Rover launch. Yes, it will require massive action.

A few examples of massive action in the gluten-free lifestyle.

Making the 24x7x365 commitment to gluten-freedom. There are no vacations, no breaks, no “just this once" cheats. Constant vigilance is required. Gluten never sleeps.

Determine if you can have a gluten-free house. Many variables to consider. Choose what's best for you and your family.

Clean your house from top to bottom. Crumbs matter. Either throw out all the gluten [and gluten-contaminated items] for gluten-free household or arrange [segregate] gluten-free/gluten products accordingly. Setup gluten-free safe zones and develop cross-contact policies and procedures [and make sure household members abide by them].

Due to the complexity of this lifestyle, you will be making some mistakes in the beginning. Everyone does, it's all part of the process. You didn't go from crawling to walking without a few falls. Don't let these events derail your efforts. Get up, dust yourself off, and try again. Resiliency and adaptivity will take you far on your journey toward gluten-free success.

The important take away here: learn from your mistakes. If you don't you will be spinning your wheels; expending a lot of energy but going nowhere - fast.

When something didn't work out as you expected, or you are not feeling well, take time to analyze what has been happening, why it's happening, and how you can prevent it in the future. Yes, you have to become a "Gluten Detective." Perhaps you've switch products because the store stopped carrying your first choice? Maybe the french fries you ordered at the restaurant were fried in the same fryer as the gluten-full items? What about overlooking gluten in a product's ingredient list?

Only those who are able to adapt to changing scenarios will continue to survive and prosper. Success is directly proportional to the degree of positive adaptation to change.

—Vishwas Chavan

I understand that our health may not always be under our direct control, but I also know that before tackling any challenge, we must first prepare ourselves mentally. Hopefully, the information presented here and in the Stages of Change article will help increase your knowledge, grow your confidence, and elevate your capacity to manage the jumble of emotions you'll experience on this gluten-free journey.

The 2018 holidays are upon us, here is a list of turkeys that are labeled as gluten-free. If a turkey isn't on this list, it may be gluten-free, it just means it wasn't checked.

Some turkeys are not gluten-free. Always check the ingredient list! If you are unsure, call the manufacturer and ask questions.

Pay close attention to any seasoning or flavorings added to the turkey. This will be the most likely source of gluten in your turkey.

Some turkeys will include a separate gravy packet - some are gluten-free, others are not. Be sure to read the ingredient list. Tossing the gravy packet is the best plan, gluten-free or not. Make it yourself, it’ll be so much better.

Be aware that the US Dept. of Agriculture (USDA) regulates labeling for meat, poultry, egg products. USDA regulations for labeling allergens [like wheat] are not the same as the FDA regulations. Companies may voluntarily comply with FDA regs, but they are not required to disclose wheat, or barley, rye, or oats or any derivatives.

If you see any of these ingredients in a USDA product…

Modified Food StarchStarchFood StarchDextrin

Call the company to verify the source as they could be derived from gluten sources.

INCREDIBLY EASY GLUTEN FREE TURKEY GUIDENeed to prepare a gluten-free holiday dinner? Butterball can help! Our Butterball fresh and frozen raw unstuffed turkeys are always gluten-free, and our gravy pack included with our Butterball Whole and Boneless Breast items is also gluten-free. And for all the trimmings, check out the recipes below to find a variety of gluten-free side dishes and desserts sure to please all your holiday guests. For a detailed explanation on our gluten-free products, visit Are Butterball Turkeys Gluten Free on our Frequently Asked Questions Page.Q: ARE BUTTERBALL TURKEYS GLUTEN FREE?A: All of the Butterball products are gluten free except for Butterball Stuffed Turkey (bread stuffing) and Butterball Frozen Meatballs. For our products that are packaged with gravy packets, the gravy packets are gluten free as well. The gravy contains rice flour instead of wheat flour and the modified food starch is corn based.

Do your hams or products have glutens in them?All of our shipped hams, turkey breasts and whole turkeys are gluten-free! Please note: Products in our retail store are not produced in a gluten-free environment.

Although our products are labeled in compliance with government regulations, we believe the best practice is for you to read the labels on the products to determine if the food product meets your required needs. Parents and individuals with food allergies and/or food intolerances are responsible for reading the label of all products they intend to use regardless of how the product is represented on this site. To help those dealing with gluten sensitivity or allergies, we have a provided a list detailing the wide range of products we offer that are gluten-free.If you have any questions we would to talk to you. Please call our Customer Service Representatives at 1-800-523-4635 or submit your question online.

Is your turkey gluten free?Yes. Turkey does not include gluten. Our turkey deli meats are gluten-free and casein-free. However, our turkey gravy and homestyle dressing contain wheat. Please read the ingredients labels and get in touch with us with any ingredient or allergy questions.

This is a companion article to “Gluten-Free Success.” I started out writing Gluten-Free Success, but a quote from Vishwas Chavan sent me down a rabbit hole. That trip resulted in this article. Thanks for riding along.

Al Klapperich

Head spinning - heart pounding - thoughts racing - brain melting. While these may be symptoms of gluten intolerance, I was describing what many feel when faced with change. Changes in lifestyle can be some of the biggest modifications we experience particularly if we have a gluten-related disorder. Transitioning to a gluten-free lifestyle turn our lives upside down. So keep calm and let's get prepared. We're going to delve into the gluten-full to gluten-free metamorphosis. I want to give you a basic understanding of change and the knowledge to make it a successful transition.
Humans have been changing since our existence; however, that doesn't mean we always like it or find it easy to do. Why? Our brains try very hard to maintain stability. Our brains are all about survival; they want to minimize threat and maximize reward. They want to predict what will happen to steer clear of danger.

BRAIN: "What's that noise? Why are those bushes rustling? Is it a wild animal getting ready to attack us? DANGER!"

When confronted with change, our brain can't predict the outcome, so it triggers the"flight or fight" response. Faced with uncertainty, we find ourselves distracted, anxious, and fearful. This heightened state decreases decision-making abilities, reduces memory, and elevates anger; not always conducive for clear, thoughtful consideration.
The human brain is an astounding organ. Not only does it need to maintain order, but it also manages adaptation. We may not notice it, but our brains are continually changing in response to our ever-changing environment; the scientific name for this process is neuroplasticity. This adaptability enables our species to thrive and survive all kinds of adversities. The trick is to use our innate adaptability to our advantage. However, this metamorphosis requires a lot of effort.
When transitioning into the gluten-free lifestyle, there are a lot of changes, unknowns, and unpredictable outcomes. Yes, our brains are going to freak-out. We are replacing old comfortable habits and behaviors with new, unfamiliar ones. Those old behaviors have become almost automatic; requiring little to no thinking. We have had a lifetime to build those neural pathways in our brains.

Neural pathwhats? The pathways along which information travels through the nerve cells of the brain. When we say or do things repeatedly, that information in our brain travels the same path. Think about a hiking trail in the woods - as the path receives more traffic, it becomes better defined, well worn and effort-less to travel - the same thing happens in our brains. When we start our gluten-free lives, we are blazing new pathways. This requires us to be conscious, and purposeful in our efforts.

Over the years, scientists and mental health care professionals have developed many thoughts and theories about the brain, the process of change, and human behavior. Of the many behavioral change models that exist, the most prevalent are Learning Theories, Social Cognitive Theory, Theories of Reasoned Action and Planned Behaviour, Transtheoretical Model of Behavior Change, The Health Action Process Approach and the BJ Fogg Model of Behavior Change. Each model has its own set of strengths and weaknesses. That's not something we'll be discussing here.
We will be exploring the Transtheoretical Model of Behavior Change (TTM) - also known as The Stages of Change. I chose this method because it made sense to me, it seemed logical and fit my personality and way of thinking. Will it be a fit for you? I don't know the answer, but keep reading you might be surprised.

James O. Prochaska of the University of Rhode Island and Carlo Di Clemente developed the Stages of Change Model in the late seventies and early eighties. Their model evolved through studies comparing the struggles of smokers who quit on their own with those requiring additional treatment. Prochaska and Di Clemente wanted to understand why some people were able to stop on their own. They determined those who were able to quit were ready to do so. [Does that surprise you?] Their model focuses on the decision-making of the individual and assumes that people do not change behaviors quickly and decisively. Long lasting change rarely happens as the result of a single, continuous decision to act. Instead, Prochaska discovered that behavioral change, occurs continuously through a cyclical process of thinking, hesitating, re-thinking, progressing forward, falling backward, starting over, or perhaps aborting the attempt to retry at a later date. [Yep, sounds like me!]
According to Prochaska's collaborator and wife, Janice M. Prochaska, Ph.D., who serves as CEO of Pro-Change Behavior Systems. "This model works with the whole at-risk population, not just those who are ready for change right then." She also estimates that only about 20 percent of people needing a health-based behavior change are prepared and ready to make the change.
While this model was initially applied to smokers, its versatility permits it to be implemented in a variety of situations. We'll be exploring how it might work for transitioning to a gluten-free lifestyle.
There are four components to TTM.

The Stages of Change - when change occurs.

Pre-Contemplation: No action for six months.

Contemplation: Intention to act within six months.

Preparation: Intention to act within 30 days

Action: Experiencing change for less than six months.

Maintenance: Experiencing change for more than six months.

Decisional Balance (Pros & Cons) - why we change.

Weigh the Pros (advantages) and Cons (disadvantages) of changing.

Pros and Cons are independent of one another. Can be high in one - low in another. High in both, or low in both.

Pre-Contemplation stage - the Cons of changing out-weigh the Pros

From Pre-Contemplation to Contemplation - the Pros consistently increase

Confidence is low and tends to grow as we progress through the stages. Inversely, temptation lessens.

We see the biggest jump in confidence in the Action and Maintenance stages

Confidence and Temptation tend to be balanced during the Action stage.

The Processes of Change - how change occurs.

Describes the basic pattern of activity we experience as we process change.

The Prochaska and Di Clemente suggest that we move through six stages of change: pre-contemplation, contemplation, preparation, action, maintenance, and termination/adoption. While not part of the original stages, we'll also examine the relapse stage. Movement between stages is not always a straight line. It's normal to cycle and recycle through them, but we can never be in two stages at once. If we get lost along the way, we figure out what stage we're in and go from there.
The Stages of Change

Pre-contemplation

In this stage we do not know we have to change, or we do know, but simply do not want to.
When it comes to the effects of gluten, there's a wide spectrum. [This stage casts a wide net over the gluten-free community.] In most cases, people with gluten-related disorders have experienced some ill-health - be it long-term or short-term. We know something is wrong, but haven't been diagnosed or have been misdiagnosed. Maybe we think our state of being is perfectly normal because we've always been that way - our entire family is that way. If we have silent celiac disease [have no symptoms], a diagnosis will catch us completely by surprise. We may have a diagnosed family member urging us to get tested, but we brush them off like a pesky mosquito.
In this stage, we don't want to hear that gluten could be a problem for us.

"Give up my bread/pizza/beer? No way, I'd die without it."
"Just because you have problems with gluten, doesn't mean that I do."
"Bah, my sensitive stomach has nothing to do with gluten."
If that sounds like denial, yes, it probably is.

To move past this stage, we must somehow become aware that a problem exists and accept that we must address it. We may come to this realization on our own after we've been given testing results from our healthcare professional, or we finally listen to our family and friends. The mere fact that we are "thinking about it" is forward progress!

Contemplation

This stage finds us realizing the value in making the change; the mental gears have been turning, and we are getting ready. We have thoughts of "Yeah, I get that gluten-free is important" but the key is to personalize them by thinking "I need to be gluten-free." Here we start to acknowledge the problem and take ownership. Our minds are now open to new ideas and information. We may begin asking questions of friends and family who have already gone gluten-free. The trick is discovering the trigger - the event, the person, the emotion, the reason we flip the switch.
We begin to explore the possibilities about what we need to do and if it will be worth the effort. These thoughts can be fleeting or last a lifetime. The bottleneck in contemplation is getting stuck in a loop of weighing the benefits against the costs of making the change. We never feel ready to commit. Deep down we know change is needed, but we can't make it happen. To help organize and visualize our thoughts, sit down with a pencil and paper - list all the pros on one side and the cons on the other. When we encounter obstacles, identify ways to overcome them.

With everything that's going on, our emotions may inspire us to act immediately. Sometimes this causes us to jump right into the Action stage - bypassing one of the most important stages - Preparation. Action without perparation can lead to disaster.

Preparation

We've made the decision to change, now we must figure out how to do it.

SELF: "What do I need to do to prepare myself to make this transformation happen?"

Any successful outcome begins with forethought and planning. We are creating a plan of action; a road-map if you will. Put it in writing, draw pictures with circles and arrows, create a wall-sized vision board, save the plan as your device's wallpaper or desktop picture as a constant reminder - do whatever generates the greatest impact.
Begin gathering the tools and resources to help us navigate our gluten-free journey. One of the most effective resources is a local support group; seek out your nearest group - inquire about their meetings (when, where, how often, etc.) - better yet, join and attend a meeting. Start building a library of trusted books and websites. This stage is about building our knowledge and confidence, preparing us for gluten-free success.
Think about all the possible ways we cross paths with gluten. Cupboards, pantries, refrigerators, freezers, silverware drawers, cutting boards, toasters, kitchen utensils, counters, medication, hair and personal care products, family gatherings, parties, social functions, restaurants, medical and dental procedures - the list is staggering. All of these things and more need our attention. It's better to have a plan of action so we can be PROactive instead of REactive.
Some of our very first actions begin appearing.
The key to mastering this stage is a commitment to all the effort, planning, and researching. We must be ready to go all-in. Being "sort of " gluten-free is like being "a little"pregnant.

Action

It's game day! We move from thinking and planning to doing. We've done the risk/benefit analysis and committed to making the leap - we've made a plan, and now it's time to act! It's here where real change starts happening.

We go on a gluten-round up at home - seeking out and removing all sources of gluten. If we can't do a 100% GF house, we gather and store all the gluten in designated areas.
Empty and clean out every cabinet and drawer [see all the crumbs in the silverware drawer? YIKES!]
Clean the fridge and stove, get a new toaster, cutting boards, and colanders.
Join and actively participate in the local support group [if you haven't done so already]; we truly need that face-to-face support.
Read the mountain of gluten-free books sitting on the coffee table.
By following our initial action plan, we'll be making significant modifications to our routines, environments, our relationships, and of course ourselves. That's the whole idea, right?

As expected, this stage will require every ounce of commitment we can muster. We may find ourselves being pushed and pulled to the very limits. Sadly, some of this stress may come from those closest to us. We need to hold fast to the course we've plotted out; for our own health and wellbeing. If we find ourselves drifting or blown off-course refer back to the plan of action we created. Keep finding acceptable alternatives and focusing on our "cans" instead of "can not's"
It's necessary to acknowledge and celebrate the progress and victories along the way - no matter how seemingly insignificant we think they are. Anything that moves us forward toward our goal is a success! We also need to recognize the failures, not to chastise ourselves, but to learn from them. If we know why something happened, we can prevent it from happening in the future.

Maintenance

The maintenance stage is about sustaining the momentum we started in the beginning. At first glance, we think the hardest part of the change process is the initial startup. True it's tough, but maintaining the change long-term is the most challenging part of the process; it's also the most important.
At this point, our new lifestyle is on its way to being established, things are starting to become routine. Confidence is increasing. Certain memories of our past lives are starting to fade. Complacency is our enemy because of the possibility of slipping into our old lifestyle may be lurking in the background. Dramatic life events such as a job change, breakdown of a relationship, a death make us vulnerable. These events can beckon us back into our old habits.
While our original plan serves us well, we keep optimizing it to address past mistakes and handle any situations we didn't expect at the start. View these challenges as an opportunity to advance your skills, knowledge, and confidence. This continued growth pushes us ever closer to the next stage. Perhaps more work on label reading is needed because small amounts of gluten are slipping below our radar despite our diligence. We didn't think about our church's communion hosts containing gluten. Our high school class reunion is coming up, maybe we could volunteer to be on the planning committee to have a voice in food options.

Pro tip: Get involved in planning activities. This gives us an opportunity educate and make positive changes from the "inside."

Because of our new gluten-free lifestyle, our bodies are adjusting, adapting, and healing - mentally and physically. After gluten reactions subside, we may discover other problematic foods. Of course, this will require additional tweaks to our plan. The diets to obtain optimal health are as unique as our fingerprints. It can take some time resolve additional food sensitivities.
As we settle into maintaining our new life, we may struggle with keeping the fire lit; we run the risk of losing the intensity. If we haven't participated in a local support group already, make it a priority. Surrounding ourselves with like-minded individuals can help keep us motivated. Fellow members walk our walk, talk our talk, share the same struggles and joys.

Termination/Adoption

We started out telling ourselves "I can't", then "I might", followed by "I will", "I am", "I am still", and now finally "I have". It's been a long road on our way to change. After spending at least two years in the Maintenance stage, we find ourselves sliding into the Termination/Adoption stage. At this point, we don't have to think so hard about what to do; we know what to do. Our daily activities come to us naturally; they become second nature, almost as automatic as breathing. We have confidence in our knowledge and abilities. Sure, we may miss certain aspects of our former life, but the desire to return to that unhealthy and sickly life has dissipated. Our transformation from gluten-full to gluten-free has come to fruition. Our new life has become our "new normal." We started out as a caterpillar and came out the other side as a butterfly. Well done. A proud moment for sure.
This does not mean we stop our personal evolution process! No, we keep moving forward. We look for new and more adventurous goals. Now is the time to dream and plan for things we never thought possible in our former life. Perhaps we have a strong desire to share what we've learned to help others. Starting your own support group or volunteering at your current group is an excellent choice. Maybe we participate more in online discussion boards or Facebook groups. Possibly start our own blog or website. There are many ways to boost our gluten-free advocacy to the next level. Maybe your new goals have nothing to do with gluten. Perhaps you want to train for that 5K, 10K, or Half Marathon you've always wanted to do? What about music or voice lessons? Now would be a great time to start that writing project. The possibilities are only limited by your imagination.
Prochaska estimates only about 15 to 20 percent of the people make it to this stage. If you find yourself falling back into previous stages, don't panic. Be gentle with yourself. Figure what stage you're in - go back to your game plan, see if it needs a bit of tweaking and renew your commitment to moving forward. Ask for help. Never give up.

Relapse/Lapse

Not an official stage of Prochaska and Di Clemente's model but some valuable insights can be learned here.
Note: Repeated gluten exposure is a serious health risk for those with a gluten-related disorder.
There is an important difference between relapse and lapse (also known as a slip). A lapse or slip is a rare, quick and temporary return to the behavior/lifestyle we've been trying to leave behind.

Example: while attending a birthday party, we have a piece of gluten birthday cake.

A relapse is a complete and total return.

Example: we tell ourselves the gluten-free lifestyle is too hard and go back to eating gluten.

Gluten is so pervasive in our society, no matter how hard we try, we will likely be faced with a gluten exposure at some point. We must be prepared and know how to deal with the inevitable. For this article, I am defining a relapse/lapse as any gluten exposure - be it blatant cheating or inadvertent/accidental.
Over the years, I've crossed paths with far too many people with celiac disease and non-celiac gluten/wheat sensitivity who willingly and knowingly cheat. Of course, they have their "justifications," but in the long-run, they are cheating themselves, and their loved ones. If you're new to the gluten-free lifestyle, I'll be crystal clear - cheating is not an option for those with a gluten-related disorder. Accidental/incidental exposure is different from blatant cheating. Regardless of how or why we consume gluten - the damage is the same; the difference here is the intent. We must be mindful of these mishaps, so we do not continually repeat them. If we peel back the layers, there's probably a fine line between repeated accidental/incidental exposures and cheating. To be caught by surprise the first time is understandable, but if the same situation happens repeatedly - it shouldn’t be - we need to take a closer look at what’s going on.

GIG of ECW's "The Risks of Cheating" looks at the complications from repeated gluten exposures.bit.ly/GIGECW_Cheating

While we may not like visiting this stage, it can be beneficial to our overall success. It's important to view relapses/lapses not as failures, but rather another stage on our way to success. If we believe this set back is a failure, we're at risk of creating a self-fulfilling prophecy - undermining our efforts and making it easier to regress to our glutenous ways.
Lapses reinforce our need to be completely gluten-free. Once we start feeling better, we might doubt gluten's role in our poor health. While having that piece of pizza when hanging out friends seemed like a good idea at the time, we are sorely and swiftly reminded why we began this transformation. We learn about resilience and persistence. When we are knocked down, we get back up and keep moving forward. Why? Because we deserve a better life and won't stop until we attain it. Because our friends and family deserve a better "us." Never give up.

"Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow." ― Mary Anne Radmacher

Ten Processes of Change
The stages of change tell us what happens when we experience changes in thinking, emotion, and behavior, but the processes of change show us how the changes come to be. The implementation of these cognitive and behavioral activities are used to advance through the stages successfully.
The processes are divided into two sections - Experiential and Behavioral. The experiential processes use increase over time and peaks in the contemplation or preparation stage and decrease in the action and maintenance stages. The behavioral processes are used most in the action and maintenance stages. This makes a lot of sense - first, we change our thinking, then we change our behavior.

1. Consciousness Raising [Increasing awareness] - Experiential

Family members, medical professionals are telling us about our gluten intolerance and our need to be gluten-free. We start gathering information to get a better understanding of the new behavior required to remove gluten.
"I recall information people have given me about gluten and gluten-related disorders."

2. Dramatic Relief [Emotional arousal] - Experiential

The information we are receiving is concerning to us. We start to feel uncomfortable or possibly frightened. Maybe there's really something to this?
"I react emotionally to warnings about gluten and gluten-related disorders. Grandma died from a stomach-related illness, no one really knew what it was. Could it have been celiac disease and she didn't know it? If I don't go gluten-free will the same thing happen to me?"

3. Environmental Reevaluation [Social reappraisal] - Experiential

We're realizing our behavior is affecting those around us. The effect may be positive or negative depending on our choice.
"I realize that if I continue to eat gluten and remain sick, I won't be able to care for my children. By being gluten-free, I am able to fully participate in life instead of watching it from the sidelines."

4. Self Reevaluation [Self-reappraisal] - Experiential

We begin to look inward and assess how our gluten-free lifestyle is affecting us. We take note of how we are feeling physically and emotionally
"I feel so much better when I'm gluten-free both physically and emotionally. I know I must remain so for life. When I cheat, I am disappointed in myself for putting my health and my family at risk."

5. Social Liberation [Environmental opportunities] - Experiential

As we delve deeper into the gluten-free lifestyle, we find more people are aware of gluten-related disorders than we first expected. Grocery stores have dedicated aisles for gluten-free products. Select restaurants, bakeries, hotels, resorts, etc. have gluten-free offerings or specifically cater to the gluten-free community. [Note: Awareness of gluten and gluten-related disorders is growing. It's better than it used to be, but still has a long way to go.]"I find mainstream awareness is making it easier to be gluten-free. Family members who have been gluten-free for years tell me it's much easier to be gluten-free today than it was five or ten years ago."

6. Stimulus Control [Re-engineering] - Behavioral

By removing gluten from our homes [or at least moving and re-arranging it], we begin the mental re-wiring process. If gluten isn't there, we won't be tempted to eat it. Instead, we replace it with healthy, gluten-free alternatives
"Whew! I feel more comfortable in my home now that gluten has been removed or sequestered. I'm also learning how to cope with gluten in situations where I don't have complete control [workplace, public venues, etc.]."

7. Helping Relationship [Supporting] - Behavioral

Having support is crucial to a successful transition. We need trusted individuals who are caring, compassionate, and willing to simply listen.
"I have a spouse/friend/family member who is tremendously supportive. Always willing to listen and be my gluten-free champion."
"My spouse/family members are horrible. They are unsupportive and at times overtly try to derail my efforts. Thank goodness for friends and my local support group members. They understand - they 'get it' - they keep me sane."

8. Counter Conditioning [Substituting] - Behavioral

Grabbing a snack or something to eat can be one of those "autopilot" type actions. It's easy to snag a bag of chips, a cookie, or candy as we walk past it.
Instead of stocking our kitchens with glutenous foods we supply it with healthy, gluten-free alternatives. We must be mindful, in today's gluten-free environment it's easy to swap out processed crappy glutenous foods with processed crappy gluten-free foods. Now is the time to make better choices - fresh fruits, veggies & gluten-free hummus, walnuts, almonds, cashews, hard-boiled eggs, high-quality gluten-free dark chocolate (Endangered Species Chocolate Bars).
"I wasn't sure about it at first, but I find myself genuinely liking veggies and hummus as a snack."

9. Reinforcement Management [Rewarding] - Behavioral

Reinforcement Management renders consequences based on decisions and actions. While reinforcement can include the use of penalties, rewards tend to yield better results over punishments. A combination of cognitive and behavioral reinforcements, positive self-statements, and external recognition reinforce positive behavior and increase the likelihood of repeated positive behavior.
While gluten-free treat food may seem like a reasonable reward option, it's not recommended to use any food as a reward (or punishment). Suggestions: Guilt-free "You Time," massage - mani/pedicure, a movie, museum trip, shopping trip, ballgame.
"I really rocked it this week. My skills, knowledge, and confidence are growing. I found a gluten-free labeled food containing barley due to my label reading skills. I alerted the appropriate parties. My family and friends are noticing and praising me. I think I'll purchase that Wusthof Chef's knife, I've been eyeing up."

10. Self Liberation [Committing] - Behavioral

We believe change is needed and commit to making that change.
"I can no longer ignore the facts. I have come to realize that I can and must be gluten-free. I know that it will not be easy, but I am ready to make the change for myself and loved ones."

“James O. Prochaska is Director of Cancer Prevention Research Center and Professor of Clinical and Health Psychology at the University of Rhode Island. He is the author of over 400 publications, including three books, Changing for Good, Systems of Psychotherapy and The Transtheoretical Approach. He is internationally recognized for his work as a developer of the stage model of behavior change.”

The purpose of this guide is to give you the necessary tools to safely make, prepare, and distribute gluten-free hosts to your gluten-free members.

Attention to detail is critical for success in the gluten-free lifestyle. It is not surprising considering lives are turned upside-down by something measured in parts per million [yes, parts per million].

Please keep an open mind about the information presented here. It can be hard to comprehend that "The Staff of Life" can make someone sick. Science proves it to be true for about 3 million with celiac disease and an estimated 17 million with gluten sensitivities; just in the USA alone.

In this guide, you'll find information on gluten, how to eliminate gluten cross-contact, several recipes for gluten-free hosts, and links to commercially available gluten-free hosts.

If you have questions or desire additional help in instituting a gluten-free communion in your house of worship, please reach out to us.

OK, true confession time. Before 2003 I rarely looked at a product's ingredient label. I saw no point in it; if it tasted good - I ate it. Hmmm, could this have been a contributing factor in my steadily increasing weight and my rapidly declining health? Yeah.￼

It should be no surprise that attention to detail increases our chances of success in the gluten-free lifestyle. After all, something measured in parts per million rearranges our lives. Talk about little things making big things happen. Coach Wooden’s words take on a whole new meaning for those with a gluten-related disorder.

Knowing what's in our food is probably one of the most important details. President Theodore Roosevelt signed into law the Pure Food and Drugs Act of 1906. Known as the Wiley Act, it gave the federal government the power deem a food “misbranded” if ingredients were “false or misleading,” or deemed “adulterated” if it contained ingredients harmful to health. Sadly, it would take nearly a century before the presence of food allergens would be recognized. A decade later, gluten-free regulations finally make it on the books.

The FDA regulates most packaged foods we see on the store shelves. The USDA regulates meat, poultry and egg products, and mixed food products that contain more than three percent raw meat or two percent or more cooked meat or poultry (e.g., soups, chilis, frozen entrees).

While USDA regulated products are encouraged to follow FDA regulations, it is not required. [This is valuable information to know when it comes to reading ingredient lists. More on this later.]

Estimates show that 80% to 90% of USDA products voluntarily comply. If you see a “Contains” statement or other indication of a USDA product, major food allergen will be plainly listed.

FDA & the Top 8 Food Allergens

The FDA’s Food Allergen Labeling and Consumer Protection Act of 2004 (FALCPA) requires food labels to clearly identify the food source names of all major food allergens used to make the food. They must use the common or usual name of an ingredient [e.g., Modified Food Starch (wheat)} or use a “Contains” statement next to the ingredient list. [e.g., Contains Wheat, and Milk]

You’ll notice the Top 8 list above only includes wheat. It does not include gluten-containing ingredients barley (malt), rye, or oats*. Fortunately, barley is most commonly listed as “barley," "barley malt," or simply “malt”. Rye is rarely used in a form other than flour and would appear in the ingredient list.

*Oats (and products that contain them) that are not explicitly certified or labeled gluten-free are off-limits to anyone following a gluten-free diet. They are a high-risk ingredient because they are exposed to substantial amounts of gluten via cross-contact from field to packagings. Oats require additional knowledge and careful consideration.

Nutritional labeling offers up a wealth of valuable information. However, it does not relate to gluten. The ingredient list is our primary area of interest. Here we will find all the ingredients used in the product listed in descending order based on weight. An ingredient weighing the most will be first, and the ingredient weighing the least will appear last.

The ingredient label is your frontline defense in determining the gluten-free status of a product. An important fact to know: FALCPA labeling regulations do not apply to the potential or inadvertent presence of food allergens resulting from cross contact. Cross-contamination of a food or ingredient can occur at harvest, transport, manufacturing, or packaging. Calling the manufacturer may be required not only for ingredient clarification but also to determine manufacturing practices.

Cross-contact and Good Manufacturing Practices

Manufacturers are encouraged [not required] to follow Current Good Manufacturing Practices (CGMP). Part of CGMP means developing and executing food allergen control plans. The plan must address six elements: training of processing and supervisory personnel, segregation of food allergens during storage and handling, validated cleaning procedures for food contact equipment, prevention of cross-contact during processing, product label review and label usage and control, and a supplier control program for ingredients and labels.

VoluntaryAllergen Advisory Statements

“May Contain,” “Processed in the same facility as” or “Processed on the same equipment as” are known as Food Allergen Advisory statements. They are voluntary and are not regulated, unlike the required “Contains” statement for food allergen ingredients. According to the FDA, companies may use advisory statements as long as they are “truthful and not misleading.”

Gluten-free experts and third-party testing tell us Food Allergen Advisory statements are not useful in determining the gluten-free status of a product.

You may find a product labeled “Gluten-Free and/or Wheat-Free” or even bears a GFCO gluten-free certification logo that has a Food Allergen Advisory statement that includes wheat.
Yes, this product complies with current FALCPA labeling laws.

For products not certified gluten-free, call the manufacturer to ask questions. Ask about the facilities, the production lines, and their policies, procedures for allergen handling, and testing protocols. If they do not answer the questions to your satisfaction, find another manufacturer with a similar product that does meet your needs.

As we discussed above, FALCPA does not directly address gluten. Before the FDA could create regulations regarding “gluten-free,” they needed to define what “gluten-free” means. It took ten years for the definition to finalize, but the voluntary gluten-free labeling regulation went into effect August 5th, 2014.

The FDA’s definition of “gluten-free,” “no gluten,” “free of gluten,” or “without gluten” is as follows:

“…the food either is inherently gluten free; or does not contain an ingredient that is: 1) a gluten-containing grain (e.g., spelt wheat); 2) derived from a gluten-containing grain that has not been processed to remove gluten (e.g., wheat flour); or 3) derived from a gluten-containing grain that has been processed to remove gluten (e.g., wheat starch), if the use of that ingredient results in the presence of 20 parts per million (ppm) or more gluten in the food. Also, any unavoidable presence of gluten in the food must be less than 20 ppm.”

Notice the last sentence of the definition: "Also, any unavoidable presence of gluten in the food must be less than 20 ppm.” This means cross-contact.

I hear you…

“Whoa, this is confusing and complicated. Isn't there an App?"

Sure, there are several, but we're not covering them in this label reading article. We’re downloading the best app into your brain this very second - it's the knowledge you are acquiring. Labeling reading is a necessary (required) skill if you consume packaged/processed foods. It could mean the difference between sickness and wellness.

Websites, published lists, and apps that report a product's gluten-free status are excellent tools to help narrow down product selection. Please do not use them as the sole means to determine the gluten-free status.

Companies change product ingredients at will, generally without notice. The product label will reflect any ingredient changes. Most companies will refer you to the ingredient list found on the product for the most up to date information. A published list (on paper or electronic form) is only as accurate as its most recent update.

Know your certification organizations. When companies mark their products as GF it may appear as if they are actually certified. It might simply be a logo from their marketing or package design department.

Read the ingredient list. Yes, even certified products. If you see any of following ingredients, the product is not gluten-free.

Wheat (including durum, spelt, emmer, farina, farro, einkorn)

Rye

Barley

Oats (unless certified gluten-free)

Brewer's Yeast

Malt

Ingredients needing verification:

Yeast Extract - this could be a by-product of the beer brewing process. Verify with manufacturer in non-GF labeled products.

Vinegar - FDA defines the single word "vinegar" to mean apple cider vinegar. However through the certification process, GFCO has encountered some usages of malt vinegar labeled as "vinegar". Remember barley/malt is not required to be disclosed. Not a large area of concern, but if you are unfamiliar with a manufacturer or product, it might be a good idea to inquire about the source of their vinegar. Better safe than sorry.

USDA Products - Products are not required to comply with FDA's FALCPA regulations. If you see a "Contains" statement (or some other wording) that a package is complying with FALCPA, you know wheat must be declared. If you do not see a "Contains" statement, you'll need to verify the source of these ingredients (they could come from wheat):

Starch

Food Starch

Modified Food Starch

Dextrin

Congratulations!

You’ve made it! I hope I’ve increased your knowledge on this multi-layered subject.

If you find yourself in the packaged food aisles reading labels, you'll run into some strange and confusing ingredients. You'll need to know what they are and if they are gluten-free. Keep in mind, if the ingredient is gluten-free, it does not mean that it's healthy for you. Choose wisely!

“Let’s face it, the gluten-free diet is complex and difficult to maneuver. Add to this the issue of common ingredients that never seem to get off lengthy lists of “things to question” and it’s no wonder that so many people doing their best to avoid gluten are still assailed by confusion and anxiety. That’s why we think it sometimes makes more sense to explain why you don’t have to worry about certain ingredients. Here are the leading ingredients that you can stop worrying about.”

This question has been asked countless times over the years. Until now, we have not had any concrete answers.

All too often the gluten-free community runs into restaurants using the same deep frier for gluten items and their gluten-free items. Of course, we know this practice is not acceptable for those requiring truly gluten-free foods, but the uneducated think otherwise.

This study appearing at the International Celiac Symposium 2017 India, shows it's quite difficult to destroy gluten with temperatures used in customary cooking methods. And when it is destroyed, it's not safe to eat [not that gluten is safe to eat in its uncarbonized state...]

MethodsBatches of samples of gluten containing flour, potatoes, and potatoes plus flour matched to controls were tested. Each batch was cooked in laboratory by use of electric stove, gas stove, oil deep fryer, induction stove and water bath and was cooked at temperature range from 91-233°C (196-452 F) for 5 up to 30 minutes. GIP content was tested by GlutenTox® Sticks (KT- 5340 Biomedal Diagnostics) based on antibody G12.

ResultsOn gas stove was necessary to keep 233 °C (451 °F) for 10 minutes to have absence of GIP detection. In range 190-200°C (374-392°F) incubation for 30 minutes was needed to have absence of GIP detection. Tests in temperatures below 190°C (374°F) showed presence of GIP at 10 and 20 minutes.

On induction stove temperature up to 246°C (475°F) for 6 minutes was needed to have negativity to GIP. Lower temperature ranges in spite of extended time up to 30 minutes were unable to get negative GIP. In oven processing never was got negative GIP signal, in spite of processing up to 210°C (410°F) and extended incubation time up to 45 minutes.

Samples processed on electric stove, water bath and deep frying showed presence of GIP in all ranges of time and temperature.

ConclusionIt is not realistic the elimination of gluten (GIP) at home kitchen by heat as temperatures higher that 200°C (392°F) are needed. Extended processing time is no compatible with conventional recipes. Fat processing over 200 is link with toxic metabolites generation which may be harmful. Use of oven or deep frying without proper cleaning may transfer GIP to meals when previously gluten containing meals were processed in these appliances.

The 2017 holidays are upon us, here is a list of turkeys that are labeled as gluten-free. If a turkey isn't on this list, it may be gluten-free, it just means it wasn't checked.

Some turkeys are not gluten-free. Always check the ingredient list! If you are unsure, call the manufacturer and ask questions.

Be aware that the US Dept. of Agriculture (USDA) regulates labeling for meat, poultry, egg products. USDA regulations for labeling allergens [like wheat] are not the same as the FDA regulations. Companies may voluntarily comply with FDA regs, but they are not required to disclose wheat, or barley, rye, or oats or any derivatives.

If you see any of these ingredients in a USDA product…

Modified Food StarchStarchFood StarchDextrin

Call the company to verify the source as they could be derived from gluten sources.

INCREDIBLY EASY GLUTEN FREE TURKEY GUIDENeed to prepare a gluten-free holiday dinner? Butterball can help! Our Butterball fresh and frozen raw unstuffed turkeys are always gluten-free, and our gravy pack included with our Butterball Whole and Boneless Breast items is also gluten-free. And for all the trimmings, check out the recipes below to find a variety of gluten-free side dishes and desserts sure to please all your holiday guests. For a detailed explanation on our gluten-free products, visit Are Butterball Turkeys Gluten Free on our Frequently Asked Questions Page.Q: ARE BUTTERBALL TURKEYS GLUTEN FREE?A: All of the Butterball products are gluten free except for Butterball Stuffed Turkey (bread stuffing) and Butterball Frozen Meatballs. For our products that are packaged with gravy packets, the gravy packets are gluten free as well. The gravy contains rice flour instead of wheat flour and the modified food starch is corn based.

Although our products are labeled in compliance with government regulations, we believe the best practice is for you to read the labels on the products to determine if the food product meets your required needs. Parents and individuals with food allergies and/or food intolerances are responsible for reading the label of all products they intend to use regardless of how the product is represented on this site. To help those dealing with gluten sensitivity or allergies, we have a provided a list detailing the wide range of products we offer that are gluten-free.If you have any questions we would to talk to you. Please call our Customer Service Representatives at 1-800-523-4635 or submit your question online.

— Low-gluten hosts are valid matter for people who, “for varying and grave reasons, cannot consume bread made in the usual manner,” provided the hosts “contain a sufficient amount of gluten to obtain the confection of bread without the addition of foreign materials and without the use of procedures that would alter the nature of bread.”

— Completely gluten-free hosts continue to be “invalid matter for the celebration of the Eucharist.”

"Q: One of my fellow-parishioners has a violent allergy to wheat, so he can't receive the Eucharist under the form of bread. He has to receive from the chalice instead. Why can't priests get permission to use some other type of unleavened bread at Mass since some people have this problem? -Helene"

It's nothing new and it has been this way for a long time. In the Catholic Church, it is impossible to consecrate anything other than wine (or mustum) and a host made of wheat and water. No priest or bishop can change 2,000 years of tradition and faith.

According to "Celiac Disease and Eucharistic Communion" by Anne Bamberg. The Jurist, 2003, 2001 (61), pp.281-289., the debate began in the 1970s. The large celiac populations of Ireland and Great Britain began asking questions of the Church.

Note from Al: I found Anne Bamberg's article very interesting. I highly recommend it. She describes celiac disease very well and shares some interesting insights into the Catholic faith.

The use of low/no gluten hosts has been reviewed by the Vatican several times over the years.

The Cardinal, again validates low-gluten hosts - invalidates the use of gluten-free hosts. He also states:

"Given the centrality of the celebration of the Eucharist in the life of the priest, candidates for the priesthood who are affected by celiac disease or suffer from alcoholism or similar conditions may not be admitted to holy orders."

Yes, this means someone with celiac disease could not be an ordained priest. The Supreme Pontiff did not approve Cardinal Ratzinger's letter as it failed to seek out a favorable solution for sick or disabled persons.

In 2003, then Cardinal Joseph Ratzinger (served as Pope from 2005 to 2013), once again revisits the topic…

CONGREGATION FOR THE DOCTRINE OF THE FAITH

Circular Letter to all Presidents of the Episcopal Conferences concerning the use of low-gluten altar breads and mustum as matter for the celebration of the Eucharist

24 July 2003

89/78 – 17498

To their Eminences / ExcellenciesThe Presidents of the Episcopal Conferences

Your Eminence / Excellency:

The Congregation for the Doctrine of the Faith has been for many years studying how to resolve the difficulties that some of the faithful encounter in receiving Holy Communion when for various serious reasons they are unable to consume normal bread or wine.

A number of documents on this question have been issued in the past in the interest of offering Pastors uniform and sure direction (Congregation for the Doctrine of the Faith, Rescriptum, 15 December 1980, in Leges Ecclesiae, 6/4819, 8095-8096; De celebrantis communione, 29 October 1982, in AAS 74, 1982, 1298-1299; Lettera ai Presidenti delle Conferenze Episcopali, 19 June 1995, in Notitiae 31, 1995, 608-610).

In light of the experience of recent years, it has been deemed necessary at this time to return to the topic, taking up the above-mentioned documents and clarifying them wherever necessary.

A. The use of gluten-free hosts and mustum

1. Hosts that are completely gluten-free are invalid matter for the celebration of the Eucharist.

2. Low-gluten hosts (partially gluten-free) are valid matter, provided they contain a sufficient amount of gluten to obtain the confection of bread without the addition of foreign materials and without the use of procedures that would alter the nature of bread.

In this letter, Cardinal Ratzinger addresses a gluten-free priest's inability to receive communion, and re-worded his statement about gluten-free candidates seeking Holy Orders

3. A priest unable to receive Communion under the species of bread, including low-gluten hosts, may not celebrate the Eucharist individually, nor may he preside at a concelebration.

4. Given the centrality of the celebration of the Eucharist in the life of a priest, one must proceed with great caution before admitting to Holy Orders those candidates unable to ingest gluten or alcohol without serious harm.

As one would imagine, low-gluten (not gluten-free) hosts would be a hot topic for the gluten-free community. The question becomes, how much gluten is in a low-gluten host?

When the Benedictine Sisters of Perpetual Adoration first created their Low-Gluten Altar Breads, Dr. Alessio Fasano helped test the wafers in 2004. They tested at 100 parts per million. This is 5x more than the FDA currently allows for a gluten-free product.

Ten years later, in 2014, independent testing organization Gluten-Free Watchdog was asked by a subscribing member to test the Benedictine Sisters Low-Gluten wafers. Below are the results…

Gluten-Free Watchdog graciously granted GIG of ECW permission to share the testing results. Thank you, GFWD for your hard work and dedication to the gluten-free community!If you're not a subscriber, please consider becoming a member.

How much gluten is safe?FDA Sets New Food Safety Regulations for Gluten-Free Foods "Research from the Center has shown that 10 milligrams per day of gluten consumption is a safe level for the vast majority of individuals with celiac disease. This is the equivalent of about one-eighth of a teaspoon of flour, says Center’s registered dietitian Pam Cureton, RD, LDN. “To put it in perspective, you would have to eat about 18 slices of gluten-free bread in one day to reach the daily 10 mg level of gluten consumption,” says Cureton.”

Yes, they contain more than 20 ppm - 50 ppm and 63 ppm for their respective samples. Nope, not gluten-free by FDA standards, hence the name - low-gluten.

As GFWD points out, parts per million is a ratio. It tells us the amount of gluten per kilogram (2.2 pounds) of food. Knowing the amount of food eaten will determine how much gluten has been consumed.

Testing reveals that a wafer weighs about 33 milligrams and contains .0019 milligrams of gluten.

Gluten-Free Watchdog provides a nice comparative:

A one-ounce slice of bread weighs about 28,350 milligrams.

A one-ounce slice of gluten-free bread (if it contained 19 ppm of gluten aka gluten-free according to FDA regulations) would contain roughly 0.57 milligrams of gluten.

That slice of GF bread could contain 300 times more gluten than one Low-Gluten Communion wafer.

On July 10th, 2017, two days after the Vatican issued their statement, The Benedictine Sisters of Perpetual Adoration in Clyde, Missouri issued their own statement regarding their wafers.

STATEMENT REGARDING “On the bread and wine for the Eucharist” LETTER SENT BY VATICAN AND MADE PUBLIC JULY 8, 2017

(CLYDE, Mo.) - The Benedictine Sisters of Perpetual Adoration in Clyde, Missouri, have made Vatican-approved, low-gluten altar breads since 2004. These breads have been tested by independent laboratories and deemed safe for use by many people with Celiac Sprue Disease.

The Benedictine Sisters of Perpetual Adoration were the first U.S. low-gluten altar bread producers approved by the Vatican. As early as the 1990s, the Benedictine Sisters started receiving requests for gluten-free hosts. With support from the Office of Divine Worship of the United States Conference of Catholic Bishops, the Benedictine Sisters produced a host compliant with the requirements of Canon Law and suitable for thousands of low-gluten customers around the world. These sales began in 2004, and the wafers have been approved by the USCCB for use in all U.S. dioceses.

The Benedictine Sisters are the largest religious producers of altar breads in the United States, making almost 9 million hosts each month. The low-gluten breads are produced in a separate facility in order to prevent cross-contamination. The low-gluten breads are made from water and wheat starch that has had most of the gluten removed.

In 2004 Dr. Alessio Fasano, at the time director of the the Center for Celiac Research at the University of Maryland*, maintained that the amount of gluten contained in one of the Benedictine Sisters’ low-gluten altar breads (tested at < .01 percent) was so minute that someone diagnosed with Celiac Sprue Disease would have to consume 270 wafers daily in order to reach the danger point. A test done in 2016 indicated the gluten content was even more minimal - less than .001 percent.

There are some people who are so sensitive to gluten that even the tiniest amount can cause discomfort. The Benedictine Sisters follow the recommendation set forth by the USCCB that those with such a serious gluten sensitivity discuss their condition with their pastor or Eucharistic minister. If the parish offers a separate chalice for Celiac sufferers, he or she may partake only of the Blood of Christ. It's best to avoid chalices that are used by those digesting regular altar breads because cross-contamination may occur.

You may have noticed above I bolded "A test done in 2016 indicated the gluten content was even more minimal - less than .001 percent" .

I completely missed that upon my first read through. It's a very important sentence to the gluten-free community. The Sisters use decimal percentage numbers in their communiques instead of parts per million. For those "mathematically challenged" individuals (yeah, that's me alright!), it doesn't sink in too well.

If we do the math (What?!?! I was told there'd be no math!), we find that .001% of gluten is really…drumroll please…10 parts per million. TA DA!

On July 18th, Center for Celiac Research and Treatment issued their response in a video.

Dr. Alessio Fasano:

"…provided there is some form of wheat in the wafer - no matter how much - that would be valid for communion. That’s the reason why the Benedictine Nuns produced these wafers that has 10 parts per million and they’re safe - so that definitely you have to be [?extremely religious? hard to make out those two words] to be over the threshold - in other words you’d have to take hundreds of those to be in trouble. Nothing has changed."

Pam Cureton, RD, LDN:

“The wafers - that the Benedictine Sisters when they first started producing them in 2004, they were 100 parts per million. But in a recent letter they sent out on this subject, they have retested their wafers and they are less than 10 parts per million - so completely safe for those with celiac disease."

As I was watching this "disturbance in the force" play out, I was becoming more and more disheartened. People were upset with the Church, people were upset with organized religion in general. I was seeing a lot of stone casting, but no one focused on "How much gluten constitutes a low-gluten wafer?"

Making choices about ones diet is a personal matter. Factor in a spiritual practice, and it complicates the matter exponentially.

If you're not the religious type, this situation may not make much sense to you. That's fine, this is not your issue to tackle. Please feel free to move on to a more suitable topic.

If you are the religious type, particularly Catholic, this situation was likely to induce some level of stress.

Sometimes, difficult decisions must be made. I share these facts neither in-favor-of nor opposition-to, but in an effort to help others make an informed decision.

We now know a low-gluten wafer contains magnitudes less gluten than a slice of gluten-free bread.

The wafers from The Benedictine Sisters might very well qualify for gluten-free certification (made in a dedicated GF facility and less than 10 parts per million of gluten).

I hope these facts make it easier for someone to reconcile this conundrum.

It takes us to work, hauls the kids to school, and totes our groceries. It’s subjected to scorching heat, freezing ice, and every kind of weather in between. Without it, life would be a lot more complicated. I present to you the ubiquitous automobile.

Once considered a toy for the rich and powerful, mass production methods made cars available to the general population. Since the early 1900s, this piece of machinery changed not only how we travel, but life as we know it.

There’s no denying the call of the open road. The 4 million miles of public roads in the United States offer a freedom that’s hard to match.

Most of us have childhood memories of that thing we call a “family vacation.” It involves piling everyone and only their “most essential” belongings into the family vehicle for the seemingly never-ending cross-country trek to somewhere or some obscure relative.

Traveling is one of the challenges we encounter in the gluten-free lifestyle. Leaving the safety of your home can be unsettling - even for the most experienced. With a little planning and some creativity, we can make it a trip we remember for a lifetime.

Traveling by car/van/Wagon Family Truckster/Vista Cruiser is not the fastest mode of transportation, but it’s readily accessible, the most economical, and indeed the most flexible method.

Arrive two hours before departure. Stand in endless lines. Put up with ill-tempered TSA agents eagerly waiting to do full body searches. Pay for going six ounces over the fifty-pound weight limit for luggage. Fahgettaboudit - we’re calling the shots - we’re traveling on our terms. Heck, we can take 50 pounds of shoes if we want! However, we’ll be using our space more effectively by toting 45 pounds of food and only 5 pounds of shoes. Hey, we gotta be comfortable walking around the world’s largest ball of twine, right?

A successful trip starts before you even insert the key into the ignition. Planning is an essential part of the equation - it’s even more critical on a gluten-free road trip.

It helps to have at least a rough itinerary for your trip. Research the cities you’ll be passing through and visiting. The internet makes this so much easier. If you are near larger cities, it’ll be easier to find grocery stores, farmers markets, and restaurants that will be accommodating. If you are meandering down the less traveled dusty backroads, you need to expect gluten-free options will be less likely - so plan accordingly.

Local support groups can be invaluable when it comes to finding trusted sources of food. As you well know, groups and their most humble leaders are amazing resources.

￼Road Trip Toolbox

Mapping sites

Mapping sites allow you to get directions to and from desired locations.

Get a bird’s eye view of the area.

Great reconnaissance tools.

Create maps with your points of interest in order to quickly see how close or far these spots are from one another.

Think carefully about the number of days and nights on the road and your “eating opportunities.” Keep in mind, “eating and drinking opportunities” in a car are almost constant. Make sure you have plenty of snacks and H2O on hand. Double bonus points for healthy snacks!

We do best if we plan for breakfast and lunch. For dinner, we try to seek out a reputable restaurant - of course - if, at all possible, this is mapped out ahead of time.

When selecting a hotel, get a room with a microwave and fridge. Having these essential tools on hand makes it a bit more convenient. If you’re staying longer than overnight, find a place with a kitchenette. Of course, this means packing some basic cooking equipment.

Stocking Your Mobile Pantry.

You’ll want to raid your kitchen or go to the grocery store to lay in supplies for your epic road adventure. You’ll want to pick foods & snacks that are easy to handle, particularly for the driver.

Since you’ve already scouted out some potential grocery stores at your stopping points, you can gauge how much food you’ll need to bring along for each leg of your Tour de ‘Merica.

Make up a cold pasta or tuna salad the night before you leave; this makes for a great lunch the next day. While you’re at it, fry up a pound or two of bacon (crispy please). You’ll be happy you did when you have access to a microwave.

No road trip is complete without a big batch of trail mix (a variety of nuts, dried fruits, chocolate chips or M&Ms…and anything else you like - be creative).

Prepping some of the foods ahead of time will pay big dividends when you’re out on the road. Washing, slicing, pealing, and packaging foods will make them easier to eat. Put these foods into sealable air/water tight containers - like Ziplock Containers/bags, or Tupperware brand containers.

￼Road Trip Toolbox

Toaster Bags

Practice safe-toasting. You’re hankering for a piece of gluten-free toast, but you can’t find a gluten-free toaster anywhere. No problem, toaster bags to the rescue!

“Only food products that have been labeled by the manufacturer as being Gluten Free are listed here in our Gluten Free Food shopping aisle. Though other products may also qualify as Gluten Free, they are not marked by the manufacturer. “

Improper food storage can result in food-borne illness; in severe cases, it can be deadly. Bacteria thrive and multiply quickly in warmer temperatures. The danger zone falls between 40 and 140 degrees. Without refrigeration or a heat source, perishable food should not be left out for more than two hours if the temperature is below 90 degrees. Reduce that time to one hour if the temperature is at or above 90 degrees. Keep cold foods at or below 40 degrees and hot foods at or above 140 degrees. Throw an appliance thermometer in the cooler to keep an eye on the temperature.

Coolers come in many sizes, shapes, and materials (soft-sided and hard sided). They range from low-tech styrofoam to hi-tech iceless car battery/AC powered travel coolers and refrigerators. The hard sided coolers offer extended cooling than soft sided. Spend some time researching which type of cooler is right for your needs - it’s worth the investment of time.

If you’re going old school with a traditional non-powered cooler, you’ll need to think about the type of ice to use. What?!? Ice is ice, no?

Crushed ice or cubes cool items faster, but blocks of ice last longer. Dry ice is also an option, but requires some special handling - we won’t cover that here.

Cube ice & water mixture is excellent for cooling beverages, but tends to be messy and doesn’t mix well with food. Soggy food is never good eats.

The best option is block ice - even better when the block is inside a container like a plastic bottle or sealable container; this helps in reducing the amount of water in your cooler.

The best bottles I’ve found are Simply Lemonade/OJ/Apple Juice/etc. 88.93 and 59 oz. Also Pure Leaf Iced Tea 64 oz. What I like about these bottles - they’re not round and have relatively flat sides - this means better contact with food for maximum cooling.

Pure Leaf Iced Tea 18oz bottles are perfect for smaller spaces. All of these bottles are made of thicker plastic and hold up very well. We use them almost weekly for grocery shopping expeditions. Soda bottles work well too.

You can also freeze water in quart sized Ziploc freezer bags or the 3” thick Ziploc rectangular containers. I’d prefer the containers over the bags. The flat ice blocks can come in handy when layering items in the cooler.

Remember, water expands when it freezes. Do not fill bottles/containers all the way to the top - leave some room for expansion.

￼Road Trip Toolbox

Cooler Reviews

Looking for your first cooler? Looking to add another one to your collection? Here’s a few sites offering their reviews of different brands/models.

Now that you have a cooler, you need to know how to pack it correctly. Here are some tips.Wash it before & after using. These guys usually are stored in the basement, in the garage, under the crawl space, in the attic. They can be hot and dirty. If they’re not clean and dry, the inside can get funky. No one likes Cooler Funk.

Pre-chill the cooler with ice and water mixture for a few hours before packing; this will ensure the cooler is chillin’. Discard the pre-chill ice bath.

Don’t pack room temperature or warm items. These items make the ice melt faster, plus it takes a long time for them to get cold. Make sure everything you pack in the cooler is already cold. For most food, it’ll be coming cold from the fridge or the freezer, but for things like beverages - it’s best to pre-chill them - just like the cooler.

Store foods in air/watertight containers. I mentioned this above, but it bears repeating. You don’t want cooler water seeping into your food. Ewww, just ewww. Tupperware brand containers are supposed to be the cat’s meow for this type of storage. Canning jars with the rubber-ringed covers would work too, but they’re glass and have the potential to break if dropped.

Place ice (whatever form you use) on the bottom of cooler. Place the perishable foods - those that need to be kept cold the most (pasta/potato salads, meats, dairy, eggs, etc.) closest to or directly on the ice. Build layers of ice/food/ice using those flat rectangular containers or Ziploc bags containing ice. Items on top of the cooler should require the least amount of cold.

Keep the lid closed of your food cooler as much as possible.

Have a separate beverage cooler if you have the room. A smaller one to keep a couple of bottles of your favorite beverage. It’ll help you stay out of the food cooler.

A full cooler stays colder, longer. If you start to run low on items in the cooler - add nonperishable foods, or even a blanket to take up space.

Keep the cooler out of the sun. Keep the cooler inside the car where there’s air conditioning - not in the trunk.

￼Road Trip Toolbox

Find Local Gluten-Free Support Groups

Always check your destination for the nearest local support group. They’ll be able to direct you to places to shop and dine.

These diets tout a host of benefits that extend beyond a traditional gluten-free diet. Many members of the gluten-free community feel best when they’re grain-free as well.

By definition, grain-free should be gluten-free. “Gluten” is the generic name for the various proteins found in grains. You ditch the grains, you ditch the gluten. It’s a no-brainer! Um, not so fast Slick…

The purpose of this article is to make you aware of an important fact that is not always discussed by the proponents of grain-free diets.

Don't be lulled into a false sense of gluten-free safety by a grain-free food - even though it may be “Paleo Certified”. Sure, the food itself may be naturally gluten-free, but gluten-cross contamination could still be a threat. My concern is for those who may not know to be concerned about cross contact. The unknowing may wonder why they’re not feeling better while being grain-free due to gluten contamination.

Gluten contamination of grains, seeds, and flours in the United States: a pilot study - July 2010

Almond flour, coconut flour, chick pea flour, flax seeds (whole or ground), whole nuts of all kinds, herbs, spices, and seasonings are some of the popular ingredients in many grain-free foods. Sure, those are all single ingredient foods - but if these foods are ground, processed, packaged on lines used for gluten containing foods, then the end product could have detrimental levels of gluten.

The bottom-line for those with gluten-related disorders who want to be grain-free - make sure your grain-free foods/ingredients are labeled or certified gluten-free.

I cross paths with many members in the gluten-free community who are troubled, angry, and hurting [both emotionally and physically]. These interactions leave me with a heavy heart. Just maybe, the information found here might help ease the pain - just a little bit.

A special thank you to Pastor Kimberly Stowell [my spiritual leader] for "planting the seed". This article was inspired by a recent sermon.

The Guest House

"This being human is a guest house.Every morning a new arrival.

A joy, a depression, a meanness,some momentary awareness comesas an unexpected visitor.

Welcome and entertain them all!Even if they're a crowd of sorrows,who violently sweep your houseempty of its furniture,still, treat each guest honorably,He may be clearing you outfor some new delight.

The dark thought, the shame, the malice, meet them at the door laughing, and invite them in.

Be grateful for whoever comes,because each has been sentas a guide from beyond."

Jalal Al-Din RumiTranslation by Coleman Barks

Life is full of twists and turns. We never know what's going to come at us.

Rumi's "The Guest House" poem reminds us to welcome all of our life experiences, even those we consider less desirable.

The emotions we encounter in this life offer us the ability to enter a new state of being - to learn something new about ourselves. Perhaps, they may be preparing us for greater things to come.

No one decides one day to play host to a gluten-related disorder. I know I didn't. This "unexpected visitor" appeared - liked the new digs and decided to hang around. In my heart of hearts, the path that I have traveled is not one I would have chosen. I am eternally thankful for what nutritionist and author, Melissa Diane Smith calls “the gift of gluten-free.” All those years ago, when I was lying on the living room floor in the fetal position, I could not have imagined what was in store for me [besides death].

I had to give up gluten, but what I have received in return is beyond measure.

It took a while to realize it, but I was given an opportunity to use my skills and talents to help others. I discovered talents I didn't know I had! The biggest gem unearthed in me was a passion and a purpose - something that was lacking in my life previously.

I consider myself an ordinary, average guy. If this transformation can happen to me, it can happen for you.

It doesn’t take long to realize that going gluten-free changes our life - forever. This new reality hits us with the force of a speeding freight train. In some cases, it comes out of nowhere. No lights, no whistles, no warning what so ever. WHAM! Our life shatters into a million pieces.

Everything we have come to know and love - changes - in the blink of an eye. What has taken us a lifetime to create must be re-engineered and rebuilt; not an easy task by any measure. This process comes with a high cost; not only financially but also emotionally and physically. Stress, frustration, fear, and anger make large withdrawals from our emotional bank account - withdrawals we may not be able to cover.

With increased rates of anxiety and depression, it’s no wonder those with gluten-related disorders consider ourselves to have a lower quality of life than our peers. As we might expect, grief soon appears. We need to allow ourselves to process those feelings. It’s easy to understand how we could get caught up in a never-ending downward spiral of negativity and despair. There are days we feel as if there is no way out.

I’ve painted a rather dark and brooding [albeit realistic] picture of what it's like to live with a gluten-related disorder. For some, it's all of this and more. For others, they adapt and adjust with minimal or no hardship. We would see similar pictures if we explored other chronic health conditions or tragic life circumstances..

We can’t help but wonder, will we ever feel better about our situation? Is there a way break out of these emotional and physical shackles? YES!

GRATITUDE

Robert Emmons, PhD, is the one of the world’s leading scientific experts on gratitude.

A Professor of psychology at University of California, Davis and director of Emmons Lab. His focus is on the science of gratitude and its effects on health and wellbeing. “Gratitude heals, energizes, and transforms lives. We are engaged in a long-term research project designed to create and disseminate a large body of novel scientific data on the nature of gratitude, its causes, and its potential consequences for human health and well-being. Scientists are latecomers to the concept of gratitude. Religions and philosophies have long embraced gratitude as an indispensable manifestation of virtue, and an integral component of health, wholeness, and well-being.”

He maintains that gratitude consists of two key components: affirmation of goodness, and knowing where it originates. He writes:

“First, it’s an affirmation of goodness. We affirm that there are good things in the world, gifts and benefits we’ve received. This doesn’t mean that life is perfect; it doesn’t ignore complaints, burdens, and hassles. But when we look at life as a whole, gratitude encourages us to identify some amount of goodness in our life.

The second part of gratitude is figuring out where that goodness comes from. We recognize the sources of this goodness as being outside of ourselves. It didn’t stem from anything we necessarily did ourselves in which we might take pride. We can appreciate positive traits in ourselves, but I think true gratitude involves a humble dependence on others: We acknowledge that other people—or even higher powers, if you’re of a spiritual mindset—gave us many gifts, big and small, to help us achieve the goodness in our lives.”

I think it's safe to say that every gluten-free person has ridden an emotional roller coaster. People suffer for years [6 – 10 years on average]; endure numerous doctor's office visits and usually walk away with more questions than answers. Frustrating, to say the least. The result of finally getting answers to the on-going health issues brings an immediate sigh of relief, almost a giddiness. “WHEW, I finally know what's wrong with me!”

All too quickly that euphoria dissipates when reality comes calling - “What am I going eat and how am I going to handle this?” Convenience – gone. Care-free dining – adios. The joy of family gatherings - replaced with dread and worry. Things that took little or no thought - now rivals the logistics of a Mars Rover launch.

For many of us, this transition can be a difficult time.

How Gratitude Can Help You Through Hard TimesBy Robert Emmons, PH.D.

“It's easy to feel grateful when life is good, says Robert Emmons. But when disaster strikes, gratitude is worth the effort.

A decade’s worth of research on gratitude has shown me that when life is going well, gratitude allows us to celebrate and magnify the goodness.
But what about when life goes badly? In the midst of the economic maelstrom that has gripped our country, I have often been asked if people can—or even should—feel grateful under such dire circumstances.”

At first glance, the gluten-free lifestyle means giving up a lot of things. However, as we start picking up the pieces of our life and clearing away the debris, we discover that goodness is still there. It has not abandoned us; it is merely manifesting itself in different ways - ways that are unfamiliar to us. Somedays, we may need to dig damn hard and deep to find the goodness.

Gratitude allows us to focus on what we have instead of what was taken away.

TIP: View what we are receiving as gifts. This helps protect us from taking them for granted.

Let’s explore a few of these gluten-free gifts. Probably the most obvious and precious gift is the opportunity to improve our health. The gift of love from someone who cares for us when we don’t feel well. The gift of compassion from our best friend or loved one who is learning right alongside us - cheering us on - being our gluten-free champion. The gift of kindness from a stranger in the gluten-free aisle at the grocery store as they help us avoid a nuclear meltdown because we don’t know which product to get. The gift of friendship as we meet others in the gluten-free community; we realize we are not isolated, nor alone. The gift of comfort when we find a product that is labeled and certified gluten-free. These examples scratch the surface.

Gratitude sounds great, but how can we best harvest these transformative powers?

Cultivating an attitude of gratitude takes a bit of work and practice. At first, you may feel uncomfortable or awkward doing it. You may be wobbly and unsteady, just like taking your first steps or your first attempt at riding a bike. You might even find it emotionally painful - you know - kind of like those muscles you didn’t know you had until after raking the lawn. Like any skill or activity, the more we do it, the better we get. It is best to start slow and work your way up.

Dr. Emmons suggests these exercises to get started. Please be sure to click the links for a more detailed description of these exercises and the reasons why they work:

Count your Blessings: Regularly make mental notes of your blessings - no need to write them down. Do it first thing in the morning or before going to sleep. Ask yourself, “What am I grateful for today?”z

Three Good Things: For a minimum of one week, write down three things that went well each day. Small or large events - it doesn’t matter. A tangible, written paper trail is essential. In detail, explain why things went well. Capture how you felt at the time and how you felt when remembering the event. Share your thoughts about what caused the event. If you happen to focus on negative feelings - shift focus toward the good events and those positive feelings.

Gratitude Letter: Write a letter to someone who did something for which you are grateful, but you’ve not fully shared your gratitude. It’s best if this person is still alive - someone you can meet face-to-face. When you meet, read them the letter. Take note of their reaction as well as your reaction. Together, discuss your feelings about the letter.

Savoring Walk: For a minimum of one week, go for a 20-minute walk. Take a different route each day. During this time, notice as many positive things as you can - sights, sounds, smells, and touches. As you notice something, pause a moment and understand why it’s pleasurable to you.

Keep a Gratitude Journal: This is similar to Three Good Things above but more in-depth. Evidence shows journalling one to three times per week elevates happiness better than daily writing. For a minimum of two weeks - at least once a week for 15 minutes, describe up to five things for which you feel grateful.

Why is Gratitude Good?By Robert Emmons, PH.D.

“We’ve studied more than one thousand people, from ages eight to 80, and found that people who practice gratitude consistently report a host of benefits: stronger immune systems, less bothered by aches & pains, lower blood pressure, higher level of positive emotions, more optimism & happiness, more compassionate, more forgiving, less lonely & isolated.”

Some people find they do better when surrounded by others - like having a workout partner(s). Participating with another person or a group of people inspires and motivates them to continue.

We know the power behind the act of expressing our own gratitude - participating with a group of people expressing their gratitude has to multiply that power - right?

If you are on Facebook and interested in participating in such a group, I invite you to check out PK Gratitude Mission.

This is a closed group, created by Pastor Kimberly Stowell - my pastor and spiritual leader of St. Stephen's Lutheran Church, Rogersville, Wisconsin (home of the gluten-free communion). Only members of the group can participate and see the posts to the group, so you’ll need to request to join or be invited.

When asked about the purpose of the group, Pastor Kimberly says: “The Gratitude Mission is about helping and upifting others.”

If large groups frighten you, fear not. Currently this group is small; consisting of less than 80 people. Everyone is kind, courteous, and respectful. I am a member; I find witnessing other people’s gratitude moving and inspirational.

~oOo~

Thank you for your time. I will leave you with one final message of inspiration…

The 2016 holidays are upon us, here is a list of turkeys that are labeled as gluten-free. If a turkey isn't on this list, it may be gluten-free, it just means it wasn't checked.

Some turkeys are not gluten-free. Always check the ingredient list! If you are unsure, call the manufacturer and ask questions.

Be aware that the US Dept. of Agriculture (USDA) regulates labeling for meat, poultry, egg products. USDA regulations for labeling allergens [like wheat] are not the same as the FDA regulations. Companies may voluntarily comply with FDA regs, but they are not required to disclose wheat, or barley, rye, or oats or any derivatives.

If you see any of these as ingredients in a USDA product…

Modified Food StarchStarchFood StarchDextrin

Call the company to verify the source as they could be derived from gluten sources.

INCREDIBLY EASY GLUTEN FREE TURKEY GUIDENeed to prepare a gluten-free holiday dinner? Butterball can help! Our Butterball fresh and frozen raw unstuffed turkeys are always gluten-free, and our gravy pack included with our Butterball Whole and Boneless Breast items is also gluten-free. And for all the trimmings, check out the recipes below to find a variety of gluten-free side dishes and desserts sure to please all your holiday guests. For a detailed explanation on our gluten-free products, visit Are Butterball Turkeys Gluten Free on our Frequently Asked Questions Page.Q: ARE BUTTERBALL TURKEYS GLUTEN FREE?A: All of the Butterball products are gluten free except for Butterball Stuffed Turkey (bread stuffing) and Butterball Frozen Meatballs. For our products that are packaged with gravy packets, the gravy packets are gluten free as well. The gravy contains rice flour instead of wheat flour and the modified food starch is corn based.

Products without Gluten Containing IngredientsWe are providing the following list of products as a general guideline for those presently produced and distributed in the United States with formulas that do not have gluten containing ingredients in the form of wheat, rye, oats, and barley. Although our products are labeled in compliance with government regulations, it is always necessary to read the labels on the products to determine if the food product meets your required needs. Parents and individuals with food allergies and/or food intolerances are responsible for reading the label of all products they intend to use regardless of how the product is represented on this site. If you have any questions, please call our Customer Service Representatives at 1-800-523-4635.

You may find a product labeled “Gluten-Free and Wheat-Free” that bears a GFCO gluten-free certification logo, but, it also has a “May contain traces of” statement that includes wheat. WHOA!

Believe it or not, this product is in compliance with current FDA Food Allergen Labeling and consumer Protection Act of 2004 (FALCPA) labeling laws.

“Contains” statements address the top eight food allergens found in the product as ingredients. (Mandatory)“May Contain” statements address potential, inadvertent cross contamination due to processing/packaging. (Voluntary)

Gluten-Free labeling supersedes voluntary advisory statements.

“May Contain”, “Processed in the same facility as”, or “Processed on the same equipment as” are known as Food Allergen Advisory statements. They are voluntary and are not regulated, unlike the required “Contains” statement for food allergen ingredients. According to the FDA, companies may use advisory statements as long as they are “truthful and not misleading”.

For years, the gluten-free community has been warned about using advisory statements for determining the gluten-free status. Their usefulness is diminished due to the lack of definition and regulation.We covered this information in our March 19th 2011 newsletter and meeting, but it bears repeating. In 2010, HealthNow hosted their 2nd Annual Gluten Sensitivity & Celiac Forum. Cynthia Kupper, RD, GIG Executive Director was a featured speaker. She was asked this question during her Q&A session:

Q: The ingredient list contains no gluten, but there's a statement about “Processed in the same facility as...”or “Processed on the same equipment as...” what do you do? A: That’s a voluntary advisory statement designed for people with IgE allergies. Many companies use it as a “CYA”. No meaning for celiacs. A group of RD's determined that it would reckless of them to suggest that statement should be used to determine gluten-free status. If you have an IgE (anaphylactic reaction), you need to think about it.A "Contains..." statement is an allergen statement and required by law. "May Contain" is not an allergen statement.”

Source: 2010 HealthNow Gluten Sensitivity & Celiac Forum DVD

Check out this example of Aldi's Baker's Corner Instant Pudding. After the ingredient list, you'll see a statement that reads: "MANUFACTURED IN A FACILITY THAT USES TREE NUTS, SOY, MILK, AND WHEAT."

Update: While it may still be gluten-free, this product is no longer labeled gluten-free.

I reached out to Aldi's to ask about this product. On May 15th, 2015, the Quality Control Supervisor from Subco Foods in Sheboygan, WI (the company that does the pudding) called me. I asked about the production lines for this product - did they run any gluten products on this line?

Tamela’s answer was very thorough! The pudding lines are dedicated - only pudding is done on them - nothing else - no gluten. They test raw materials for gluten coming into the plant - they test during production and they also send samples out to a private lab for finished product testing. Between pudding flavor runs (vanilla/chocolate/etc), they follow a strict teardown and cleaning process. They are very serious about food allergens.

Also the pudding lines are isolated from their jello lines. She said they do not want dairy getting into the jello lines.

So, what do we do with products like this? Call the manufacturer to ask questions. Ask about the facilities, the production lines, and their policies and procedures for allergen handling. If they do not answer the questions to your satisfaction, find another manufacturer with a similar product that does meet your needs.

This retrospective database analysis included a total of 328 gluten-free labeled products previously tested for gluten content by Gluten-Free Watchdog.

Here's what they found…

14/328 (4%) labeled gluten-free products contained a level of gluten of at least 20 p.p.m. Of these products, 12/14 (86%) did not include an allergen advisory statement for wheat or gluten on product packaging.

The 14 products that contained a level of gluten of at least 20 p.p.m. included two beverages, one spice, and 11 grain-based foods. Of the grain-based foods, 5/11 (45%) were oat products.

31/328 (9%) foods tested for gluten included an allergen advisory statement for wheat or gluten on product packaging. Three of these 31 (10%) products contained quantiﬁable gluten of at least 5 p.p.m.

SUMMARYOn the basis of this retrospective data analysis, the use of allergen advisory statements (regardless of type) on foods labeled gluten-free was not indicative that a food was out of compliance with the gluten-free label ing rule. Due to the current lack of federal regulations for allergen advisory statements, consumers with celiac disease and other gluten-related disorders should not make gluten-free purchasing decisions based solely on the presence or absence of an allergen advisory statement for wheat.

Some other notable information in this paper…

One issue that may be causing mistrust among gluten-free consumers when products contain both a gluten-free claim and a precautionary statement for wheat is the lack of required testing for foods labeled gluten-free. In the US,while foods must contain <20 p.p.m. of gluten to be labeled gluten-free, testing is not included in the FDA’s codiﬁed rule.

Increased education is needed to advise consumers that a gluten-free claim applies to gluten that may be in a product due to ingredients and cross-contact. Under the gluten-free labeling rule, a gluten-free claim on product packaging means the food must comply with all criteria of the rule,including containing <20 p.p.m. of gluten. This is true regardless of the presence or absence of an allergen advisory statement for wheat [2].

When combining the results of both studies…

4/45 (9%) products that DID include an allergen advisory statement for wheat or gluten on product packaging contained quantifiable gluten.

52/384 (14%) products that did NOT include an allergen advisory statement for wheat or gluten on product packaging contained quantifiable gluten.

In this database review, precautionary labeling for wheat or gluten on products not labeled gluten-free but appearing to be free of gluten-containing ingredients was NOT a useful predictor of gluten content. In some cases, consumer reliance on precautionary statements for wheat or gluten could have resulted in choosing a product contaminated with gluten.

• 87/101 (86%) products tested for gluten did NOT include an allergen advisory statement for wheat or gluten on product packaging. • Fourteen products (14%) tested for gluten DID include an allergen advisory statement for wheat or gluten on product packaging. • Of the 87 products that did NOT include an advisory statement, 13 (15%) contained quantifiable gluten at or above 5 ppm including 4 products (5%) that tested at or above 20 ppm of gluten.

• Of the 14 products that DID include an advisory statement, only 1 (7%) contained quantifiable gluten at or above 5 ppm.SUMMARYOn the basis of this analysis, the current use of allergen advisory statements for wheat or gluten are not useful predictors of whether or not a single or multi-ingredient food product contains 20 or more p.p.m. of gluten. Precautionary statements should be regulated and standardized so that they are helpful to the consumer.

Some other useful information found in this study…

In terms of foods labeled gluten-free, consumers are advised to trust the label regardless of allergen advisory statements for wheat or gluten. This is due to the gluten-free labeling rule applying to both gluten in ingredients and gluten that may be found in a product due to cross contact. However, when it comes to foods not labeled gluten-free but appearing to be "gluten-free" based on ingredients, there are no established guidelines for individuals with celiac disease on whether they should avoid products with allergen advisory statements for wheat or gluten.

Increased education is also required to let consumers know that FALCPA includes ingredients only and does not include allergens that may be in a product unintentionally due to cross contact. Increased education is also needed to let consumers know that a gluten-free label applies to gluten that may be in a product due to ingredients and cross contact and that regardless of the source of gluten the product must contain less than 20 p.p.m. gluten.

“Advisory labels or “may contains” (also called precautionary warnings) alert customers that traces of an allergenic food might unintentionally have wound up in a packaged food.

This inadvertent cross-contact can occur because of shared processing lines or baking equipment, or because workers use the same gloves while producing a number of products.

– The wording of the warning label does not give an indication as to the risk of the allergen being present.

– Because advisory labels are voluntary, there is no guarantee products without these warnings will not contain traces of allergens. If you are ever unsure about a packaged food, Allergic Living suggests calling the manufacturer to find out about its food allergy management practices. If company representatives can’t adequately answer your questions, avoid the food.”

Your spouse, family member, or friend has suffered from recurring health issues for years. You’ve seen them at their best, and at rock bottom. Regardless of how long they’ve been suffering, you don’t like to see it. Finally, someone figures it out; your loved one has just told you they must be gluten-free. You’re not really sure what gluten-free is or what it means, but you politely listen to their brief explanation and nod your head sympathetically.

“Wow,” you think. “That sounds horrible. Sure glad I don’t have to go through that.”

Sorry to break the news, but pack your bags – you’re going on the journey with them. Why? Because you are a caring, compassionate human being and you want them to be healthy and happy. Good for you!

If you’re a spouse, you made that commitment when you said, “I do.” If you’re a friend, you signed up when you accepted their most precious gift of trust. If you’re a family member, your name has been on the trip’s manifest since birth. They deserve your respect and help because that’s just what family members do for one another.

“…but, I know nothing about this, how can I be so important?”

The important take-away here – you have the power to help them. Your support in this effort is crucial; it could mean the difference between their success and failure. Support doesn’t require money, or even specialized knowledge. It can be as simple as just being there for them in whatever way they need you - a smile, a hug, a sympathetic ear, or a strong shoulder. It can also be much, much more.

Today, there are a lot of resources available to those who are gluten-free. However, very few are designed to help you – the person who loves and cares for their gluten-free loved ones – the gluten-free champion.You may not know it, but hiding beneath your street clothes is a superhero’s suit just waiting to be called into action.

We have a few tips and wealth of information in The Gluten-Free Champion’s Academy (see below) to help you make the leap.

Peggy’s Story

What do you do when someone you love gets sick? What do you do when nothing helps them to feel better? What do you do when your best friend, your soul mate and your life partner has changed so drastically that you barely recognize him...

That was the position I found myself in about 14 years ago. It all started gradually, an upset stomach here, some foot pain there, a little more burping and belching than usual. Nothing big, until it got big. When my normally cheerful, energetic, quick to laugh husband was replaced by a pale, thin, ill man I hardly recognized. A person who sat listlessly staring into space not wanting to see friends or attend family functions for no other reason than "I just don't feel good”.

As the complaints increased there was much "encouragement" to see the doctor and get these thing "checked out". The assumption was that a test or two would pinpoint the problem and a medication would be prescribed and everything would be fine.

That’s not what happened. A test or two turned into multiple tests and multiple doctors which did not find the root of the problem. Medications were prescribed that only helped a little or not at all. No real answers were to be found. In the meantime Al continued to get sicker, I felt even more helpless.

I worked in healthcare for God's sake, someone, somewhere must have some idea, something that would make him well again. With increasing frustration and fear, I often found myself crying in the shower so he wouldn't know how afraid I was. I wondered if he were dying as I was just standing by helplessly, watching.

Fast forward to March 2003 where we find ourselves on a white sandy beach surrounded by the beautiful turquoise blue water of Jamaica. When my unwell husband requested a vacation to somewhere warm, I, his loving and dutiful wife made it happen! That March was my turning point.

Al had been doing a lot of research and discovery about this thing called gluten and it's effects on some people. While the discoveries he was sharing with me were very counter intuitive; [read what do you mean crackers and toast can give you a belly ache?] they oddly sounded like him and his symptoms. His gastro doctor was willing to take intestinal biopsies for celiac disease, however the samples did not show intestinal damage. Finding non-celiac gluten sensitivity presented with similar symptoms without intestinal damage, Al started experimenting with a “gluten-free” diet but, the first real evidence I saw happened in Jamaica.

Before the week ended I had my husband back! The energetic guy who was actually looking for a pickup volleyball game! Some may say it was the magic of Jamaica and I won't disagree, but a large part of that magic was the naturally gluten-free diet that he ate.

That week "sealed the deal" for me. Any time that Al would question himself about whether being gluten-free was really the root of the problem or not, my mind went back to that week and the health it brought.

“Do not look back. You are not going that way."

When Al started down the gluten-free path, I knew I would walk it with him. There was no question. If this is what needed to happen for him to be well, this is what we would do. I would help him in any way I could, we were a team. We both come from families where whining, fussing or complaining didn't get you very far; you took what was given to you and made the best of it. That's how we took on this challenge. I am not saying it was easy and we did everything perfectly....it wasn't and we didn't.

There were plenty of times the groceries I brought home went to the local food pantry because l had made the wrong choices; gluten-free labeling laws didn’t exist then. Full loaves of bread and bowls of pasta were chucked into the garbage because they were so bad Al couldn't eat them. The first batch of beautiful gluten-free cookies came out of the oven only to disintegrate into dust when I tried to take them off the pan! We learned from those experiences and tried to make things better the next time. We didn’t give up. I think the key word is we, I think that Al has been just as much of a support to me as I have been to him. He has always encouraged my efforts and has been appreciative of them.

As the gluten-free lifestyle became our new normal, it became more important to me that it be “normal”. When I was asked by family and friends about the diet, I always responded there are more things he can have than things he can't.

It also became my goal to show people that gluten-free was not synonymous with taste-free. I have always enjoyed cooking and baking for people. Nothing gives me more pleasure than to have someone eat and enjoy what I have made and then ask me to make it again. Slowly, I continued transforming all Al's favorite gluten-full treats to gluten-free treats. It became my passion to learn new ways of baking so others wouldn’t feel left-out. And then to be able to pass on what I had learned to others just added to my joy. It has become my way of supporting and helping others on their gluten-free journey. In my humble opinion no one, gluten-free or not should ever go without a good cookie or piece of cake!

Al and I have also been blessed with supportive family and friends. Their willingness to make sure Al can eat safely in their homes has been a Godsend to us. Their efforts have not gone unnoticed or unappreciated and have made my job as main support so much easier.

I never considered myself a "champion", but according to the definition, I am and will continue to stay the course.

“When patterns are broken, new worlds emerge.”

- Tuli Kupferberg

Embrace Change

You’ve probably discovered this will be a life changing event. It is not simply a change in diet - it’s a change in lifestyle. The cold, hard truth - it affects every aspect of day-to-day living. Not only for your gluten-free loved one, but for you too. Because of your relationship you will experience these changes with them, albeit in a different way.

Knowing how to deal with change is important. Change is never easy. In fact, it’s one of the most difficult aspects of this. It will take time and effort, but the gluten-free lifestyle will become the new normal both inside and outside your home.

As with anything new, there will be challenges to navigate and some things will need to change to keep your loved one safe.

Embrace these changes and you will see all the good things that will come with your new normal.

Know what you are dealing with.

Knowledge is your friend. Once it has been determined that gluten is the culprit making your loved one ill, learn about it.

You don't need to know the exact science, but have a basic understanding of what happens to the body when gluten is ingested, how can it make that body feel, where gluten is found and what should be avoided.

You will need to adjust how much you know around your loved one’s knowledge. If your situation requires you to be the “guardian of the knowledge” (e.g. for your child) you’ll slowly want to pass that knowledge on to them. Teach them how to look for gluten and know its hiding places, teach them how to cook.

CommunicateAs in most things, communication is key. An essential element of communication is listening. Your loved one is going through so many changes, both physical and emotional. If they are newly diagnosed there is a grieving process to navigate. Sometimes they may need someone to listen to their frustrations and fears...not offer opinions and solutions, but just to listen.

Relationships can become strained when chronic health issues arise. Illness can breed feelings of fear and loss, guilt and resentment. These feelings make it easy to build emotional walls. When the walls go up, the communication shuts down. It can be painful, but having conversations about what’s going on is vital.

When emotions boil over, things can be said in the “heat of the moment”. Conversations can quickly turn into confrontations, further damaging the relationship. It’s important to know the difference between the two.

“Confrontations are usually fueled by anger.Conversations are fueled by curiosity.

Confrontations have an aura of a judicial proceeding.Conversations frame a problem as something to be solved.

Confrontations have an element of moral superiority.Conversations happen between equals.

Confrontations shield the confronter from any responsibility.Conversations say “we’re in this together."

Conversations will preserve the relationships while the people involved work toward understanding and solutions.”

Beside working through the physical and emotional elements, there will be many practical, day-to-day things that need to be discussed. Meal and menu changes, how to handle kitchen clean up and what precautions need to be taken to avoid cross contamination or make the house totally gluten-free, how to replace those family favorite foods with a good gluten-free alternatives.

You may need to communicate with family and friends about the new diet and the importance of your loved one's need to not deviate from it. Yes, a little bit of gluten does hurt!

Being open to and answering their questions and planning strategies on how to manage family functions and parties will be a large part of the communication process.

You may also need to convey gluten-free requirements to people outside your immediate circle - servers in restaurants, the pharmacist at the drug store, and the pastor at church, and yes - even medical professionals.

Be clear, concise and confident in your communications.

~0~

Sometimes your gluten-free loved one isn’t taken seriously, so it helps to have another person [like yourself] be an ambassador - an advocate [fancy words for a “kick-ass champion”]. Someone who will travel not ahead, nor behind, but beside them on the path to gluten-freedom.

It may be trying at times, but please understand they are not being difficult on purpose. Everyone wants to be happy and healthy, for some it requires a bit more effort.

Please be patient, be kind, be positive, and most of all be there for them - “hold space” for them. Your love and support will be appreciated beyond words - beyond measure.

There may be days when you feel like you are not making an impact, but know you are an important team member. Not every hit is a home run, and sometimes a superhero simply helps someone cross the street. No act of kindness is too small.

Kudos to you for stepping up and becoming a Gluten-Free Champion!

Peggy & Alan KlapperichGluten Intolerance Group of East Central Wisconsin

P.S. Your cape should arrive within four to six weeks.

Success

“To laugh often and love much; to win the respect of intelligent persons and the affection of children; to earn the approbation of honest citizens and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give of one’s self; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to have played and laughed with enthusiasm and sung with exultation; to know even one life has breathed easier because you have lived—this is to have succeeded.”

“As much as 37% of partners of patients with celiac disease reported relationship burden, according to a study presented at Digestive Disease Week 2016.

Given the multifaceted manner in which celiac disease can affect patients, it's not unreasonable to expect that the impact of celiac disease may extend to their relationship partners,” Abhik Roy, MD, gastroenterologist at New York-Presbyterian University Hospital of Columbia and Cornell, said during a presentation. “Our study shows that partner burden is quite common in celiac disease with more than one-third of partners experiencing at least mild to moderate burden.”

Our study shows that partner burden is quite common in celiac disease with more than one-third of partners experiencing at least mild to moderate burden.

The degree of burden found in this study was similar to that reported for IBS and cancer, the researchers wrote. In addition, the researchers recommended that health care providers address these relationship factors in their care of patients with celiac disease.

As patients and partners progress in their relationships, the burden of celiac disease seems to shift from the short term focus on diagnosis and dietary modifications to the prognostic implications and uncertainties of a chronic illness,” Roy said. “This illustrates the emotional burden of celiac disease and stresses the importance of including the partner in clinical education and counseling."

Gluten is the generic term for the proteins found in grains. The proteins found in wheat (durum, graham, kamut, semolina, spelt, emmer, einkorn), barley, rye and commercial oats (think Quaker Oats) are not acceptable for those that gluten-free. Certified gluten-free oats are acceptable for some.

Where is gluten found?

Just about everywhere! Bread, pizza, cake, cookies, crackers, pasta, cereal, soups, sauces, beer, candy - just to name a few foods. Many processed foods contain gluten in some form or another. It's very prevalent in the Standard American Diet.

It’s even found in personal care, hair and beauty products.

How Much Gluten?

Think of gluten as a poison. How much arsenic would you like in your food?

Not only must the food be gluten-free, it must not come in contact with any gluten.

A condition that is still evolving in the eyes of mainstream medicine.NCGS can present with many of the same symptoms of CD, however it does not present with same autoimmune intestinal damage. The lack of intestinal damage does not make this condition any less severe than celiac disease. Damage can occur in other body parts.

"Changes in lifestyle can be some of the biggest modifications we experience particularly if we have a gluten-related disorder. Transitioning to a gluten-free lifestyle turn our lives upside down. So keep calm and let's get prepared. We're going to delve into the gluten-full to gluten-free metamorphosis and give you the knowledge to make it a successful transition.

I want to give you a basic understanding of change and the knowledge to make it a successful transition."

“Listening, which is one half of the art of conversation, is an act of connection. Even if you can't touch or see someone, you feel connected if you hear their voice.

Listening enhances the health of your marriage and other close relationships.Listening to yourself enables you to live with more well-being, especially if you combine listening to yourself with listening to others.Listening to your body keeps you physically healthy.And between a couple, listening is an act of love.”

What it Really Means to Hold Space for SomeoneHow to be there for the people who need you mostby Heather Pletthttp://bit.ly/1WDtm6f

“What does it mean to “hold space” for someone else?

It means that we are willing to walk alongside another person in whatever journey they’re on without judging them, making them feel inadequate, trying to fix them, or trying to impact the outcome. When we hold space for other people, we open our hearts, offer unconditional support, and let go of judgement and control.

8 Tips to Help You Hold Space for Others

Give people permission to trust their own intuition and wisdom.

Give people only as much information as they can handle.

Don’t take their power away.

Keep your own ego out of it.

Make them feel safe enough to fail.

Give guidance and help with humility and thoughtfulness.

Create a container for complex emotions, fear, trauma, etc.

Allow them to make different decisions and to have different experiences than you would."

According to a Columbia University study, celiac patients reported better quality of life when they participated in face-to-face support groups compared to online support groups. Also, longer duration of face-to-face support generated a greater quality of life.

In contrast, they found lower quality of life reports when patients spent more time in online support groups.

“Coeliac disease: the association between quality of life and social support network participation”Source: http://bit.ly/2K721uL

The gluten-zero lifestyle isn’t a walk in the park. It requires hard work, dedication, commitment, and knowledge. The emotional and physical stress of a difficult lifestyle change piled on top of years [often decades] of ill-health, takes it’s toll. Every opportunity for a positive outcome needs to utilized.

Network equipment giant Cisco performed a study of human behavior and the barriers to effective collaboration. Overwhelmingly, the study showed people were more engaged when they could see and hear each other well; interacting the way humans have been doing since the dawn of their existence: face-to-face.

Humans require direct, face-to-face interaction with one another in order to be happy and healthy.Online groups can be a great source of support, however, it’s hard to replace friendly smiles, nodding head(s) of agreement, the sympathetic touch of a hand, or a spirit lifting hug.

If you do not belong to a local support group, please seek out the nearest group.

Looking for a group? You can search for group national affiliated [Celiac Disease Foundation (CDF), Celiac Support Assoc. (CSA), Gluten Intolerance Group (GIG)] groups here:

Oats and products made with oats have been burning up the internet lately. People in the gluten-free community started asking manufacturers exactly what kind of oats are used in their products…with surprising results. More on that later, but first a little background information on said ingredient of discussion. Oats have been controversial for over 20 years. Are they acceptable on a GF diet or not?

The Scoop on OatsPlease use these excellent articles to help you and your medical professionals to make an educated decision if oats are right for you.

"Adding oats to increase the nutritional value of a gluten-free diet does not appear to affect symptoms, histology, immunity or serologic features of patients with celiac disease, according to new research published in Gastroenterology.""These results are “reassuring, and suggest that non-contaminated oats are tolerated by the great majority of patients,” Peter H. R. Green, MD, professor of medicine at Columbia University Medical Center, and director of the Celiac Disease Center at Columbia University, and colleagues wrote. However, they noted that their “confidence is limited by the low quality and limited geographic distribution of the data.”"

To better address the controversies surrounding the safety of adding oats to a gluten-free diet, Green and colleagues reviewed studies evaluating the safety of oats as part of a gluten-free diet in patients diagnosed with celiac disease or the related skin condition dermatitis herpetiformis. They ultimately included 28 studies published up to January 2017 in their analysis, six of which were randomized controlled trials that used pure uncontaminated oats, and two of which were non-randomized controlled trials (RCTs, n = 661), while the rest were observational studies. Only RCT data were included in a meta-analysis.

One year of eating oats showed no significant effects on symptoms, histologic findings, intraepithelial lymphocyte counts, or serologic test results. These findings were comparable in both adults and children.

Further, the results of three non-RCTs suggested that dermatitis herpetiformis lesions did not worsen after consumption of oats. No studies compared regular vs. pure oats.

The investigators noted that all available RCTs were conducted in Europe, and because the purity of oats depends on the country of origin and its regulations, there is an “urgent need for studies in North America and other regions of the world where [celiac disease] is prevalent. Results from studies in Europe using locally sourced oats cannot be extrapolated to North America.”

They concluded that available data suggest celiac patients can safely consume non-contaminated oats, but more rigorous data are needed

Be sure to read the entire comment from Dr. DiMarino, Jr.,MD at the end of article.

"Prolamines are the alcohol-soluble portion of the protein in wheat, rye and barley, and are antigenic in celiac patients. The prolamines in oats are not antigenic, so theoretically it’s possible that eating oats should not be harmful to celiac patients. However, some prior studies have suggested that celiac patients may experience a reaction to eating oats.

At the Jefferson Celiac Center, we believe the science behind the idea that the prolamine component of oats is safe as compared with the prolamine in wheat, rye and barley. However, we also recognize that cross-contamination of the oat supply is more likely in the U.S. than in Europe. Therefore, we advise newly diagnosed celiac patients who are still symptomatic to avoid oats. Once their anti-tissue transglutaminase or deamidated anti-gliadin antibody levels normalize, and they become asymptomatic, we advise them to cautiously introduce the purest form of oats available as there are several products that avoid cross contamination. If they become symptomatic again after consuming oats, we know that either cross-contamination has occurred, or they may be one of the perhaps 5% to 10% of patients who also may have an intolerance of oats for reasons unrelated to celiac disease."

Bottom line Uncontaminated, certified gluten-free oats are considered safe for most people with celiac disease. Consult with your personal healthcare team before introducing oats into the diet. Quantity should be limited to the recommended maximum of ½ cup dry oats per day. The main issue surrounding oats for those following a gluten-free diet is cross-contamination. In light of the fact that purity protocols are not regulated, and that mechanical sorting can vary from processor to processor, only consume oats which are labeled – and preferably certified – gluten-free.

Currently, most medical professionals say pure, gluten-free oats can be tolerated in limited amounts [up to a 1/2 cup per day for adults].

Many in the gluten-free community would beg to differ with that recommendation because they react to gluten-free oats as well. Those in the grain-free/low-carb community offer convincing evidence that supports their lifestyle too.

Regular followup testing is also advised to make sure intestinal damage is not occurring. For those newly diagnosed, it’s suggested to restrict the use of oats for up to one year.

Also be aware that some celiacs react to the protein found in oats [known as avenin] just as they react to the proteins in wheat, barley, rye.

If you know they cause you discomfort, do not eat them.

The experts who recommend oats, all agree that only pure, uncontaminated gluten-free oats be used - no commercial oats allowed.

Why? Cross contamination with gluten [wheat, barley, rye].

Often times oats are grown in rotation with wheat, barley, and rye. Stray plants can be left behind that get harvested with the oats. Harvesting, transporting, and processing of oats can use the same equipment as gluten-containing grains, thus exposing oats to further contamination.

PepsiCo scientists recently published a second article in the scientific peer-reviewed literature on the difficulties associated with testing oats for gluten contamination. This article entitled “Kernel-based gluten contamination of gluten-free oatmeal complicates gluten assessment as it causes binary-like test outcomes” compliments their first article entitled, “Gluten-containing grains skew gluten assessment in oats due to sample grind non-homogeneity.”

Bottom Line. Based on the findings of the research by scientists from PepsiCo, Gluten Free Watchdog calls on ALL suppliers and manufacturers of gluten-free oats whether purity protocol or mechanically/optically sorted, and their certifying bodies to reevaluate their testing methodology and requirements for certification, respectively.

Recommendation. The situation with oats continues to evolve. As mentioned above, Gluten Free Watchdog’s position statement on oats will be updated in the near future. In the meantime, my advice is:

Choose your oat products based on your comfort level with regard to the level of information provided to you by manufacturers. You may want to consider the following:

Does the manufacturer disclose whether they use purity protocol or sorted oats?

Do they disclose their testing protocols?

Do they disclose the assay they use to test oats for gluten contamination?

If a manufacturer refuses to answer any of these questions or responds by saying the information is proprietary, the advice of Gluten Free Watchdog is to move on to another company.

A PepsiCo Inc./Quaker Foods and Snacks (QFS) study on testing oats for gluten content. This important study reveals the difficulties in testing grains for gluten. Bottom line: Final product testing for oats must be extensive! For an easy-to-understand write up on this study (and links to actual study), please check out "Must Read Study Courtesy of Quaker on Testing Oats for Gluten" by Tricia Thompson, RD

OK - back to the issue at hand…

Shortly after Cheerios announced their recall of 1.8 million boxes due to gluten contamination, Quaker Oats announced they will now be offering “gluten-free" oat products.

Like General Mills, Quaker Oats will not be using oats grown/harvested/transported using a purity protocol. They are using regular oats that will be "cleaned" via mechanical or optical sorting methods.

What is a Purity Protocol?

On April 7th, 2017, Gluten Intolerance Group of North America and four of the largest Purity Protocol oat producers in North America (Montana Gluten Free Processors LLC, Cream Hill Estates, Ltd., Gluten Free Harvest/Canyon Oats, Avena Foods Limited) published a consensus definition of Purity Protocol oats.

Having a standard definition allows consumers and buyers to know that oat suppliers are following industry-accepted or uniform best practices.

Protocol Requirements.Purity Protocol oat packagers/processor/millers must ensure that their grower network is adhering to the following farm requirements (as specified in grower agreements):

Seed Purity: All gluten-free oats must start from seed, either purchased or harvested from the previous crop, that is free from all gluten-containing grains as determined by seed counts.

Crop Rotations: Growers shall follow a nongluten crop rotation, or a minimum three-year crop rotation between the last gluten-containing crop and the first pure oat crop, and document all previous crops grown.

Isolation Strips: Isolation strips are required between adjacent gluten-containing crops or conventional oat crops and must be a minimum of 6 feet in width.

Field Inspection: There must be inspections for potential sources of gluten cross-contamination during the growing season; these should be performed by third party inspectors trained specifically for gluten-free inspection.

Traceability: The farm must identify the oats by land location, and document the harvesting equipment, cleaning equipment, transports, storage facilities, and final distribution for the grain from each location.

Equipment Cleaning (trucks, cutters, harvesters, augurs, conveyors): Whenever possible, growers should use dedicated equipment. If not, they must use a validated cleaning process prior to handling gluten-free crops. Growers must also maintain documentation of the previous grains in the equipment.

Harvest Samples: These must be visually inspected, preferably by a third party laboratory, for purity. Sometimes referred to as a “seed count.”

Conformance with the grower agreement must be documented either by the grower or through an audit by the purchaser. There must be validation that the grower agreement is in compliance with these requirements through documentation and inspection records. The documentation must be reviewed and verified. Samples must be visually inspected by the purchaser for purity prior to receipt or unloading at the purchaser’s facility.

Purity Protocol oat packagers/processor/millers must also ensure that they meet the following processing requirements:

Dedicated gluten-free receiving systems.

Dedicated gluten-free in-process tanks/silos/storage.

Dedicated gluten-free grain cleaners, or appropriate procedures for cleaning grain-cleaning equipment and for the storage of portable grain cleaners.

Dedicated gluten-free milling equipment.

Dust control/collection procedures and schedules for changing or cleaning filters.

Dedicated pneumatic equipment/aspirators.

Dedicated extrusion equipment, or written procedures for cleaning or purging extrusion equipment, if applicable. Must document purge volume, and that purge material tests negative for gluten prior to beginning gluten-free processing.

Dedicated baggers/fillers.

Dedicated pre- and postprocess containers (such as totes).

Dedicated rail cars, trucks, or transports, or procedures for the cleaning and inspection of rail cars, trucks, or transports used to deliver product to other facilities or customers.

Sorting equipment may not be used for oats as a substitute for obtaining purity, but may be used as a supplement to the purity protocol to ensure purity.

The final product must meet the 20 ppm threshold in order to be labeled gluten-free in the United States, Canada, Europe, and other countries following the Codex Alimentarius guidelines. The product must meet the regulations for gluten-free labeling in the country of sale.

The final product must meet the 10 ppm threshold in order to be certified gluten-free by GFCO.

While the requirements of the Purity Protocol are excellent for reducing the risk of gluten contamination from wheat, rye, barley, and their hybrids and related grains, these steps do not remove the requirement that the final product be verified as containing less than 20 ppm gluten in order to be labeled gluten-free, or less than 10 ppm gluten to be certified gluten-free by GFCO.

Mechanical or optical sorting are methods to remove all unwanted kernels of wheat, barley, and rye from the oats. These processes "clean" regular oats after they've been harvested and transported to the processing facility.

Mechanical sorting methods of grains and seeds have been around since the late 1960s, according to the USDA. These sorters use a variety of physical characteristics like size, shape, density, texture, terminal velocity, electrical conductivity, color, and resilience.

As technology advances, these processes improve (but is it enough?) General Mills spent five years and millions of dollars to build a seven-story tall building to "clean" the oats.

Optical sorting uses high speed, high resolution cameras and proprietary software to detect size, shape, and color parameters. Rejected items are ejected from the system using blasts of precise, high pressure air.

Take a listen to GF Jules BlogTalk Radio Interview with Seaton Smith of GF Harvest - A Gluten-Free Oats Company. You'll hear how they do gluten-free oats and what it means to their family of celiacs: http://bit.ly/1VwyFEm

It didn’t go unnoticed that a few popular gluten free companies are missing from the list above.

For years, the gluten-free community have been told to only use pure, certified gluten-free oats due to the gluten contamination risks. In the past, this meant acceptable oats were produced and processed according to a purity protocol similar to the one described above.

Most recently, it's been difficult to determine the pedigree of oats used in a product. Companies do not always give clear answers when asked about the oats in their products. As some of the manufacturer's statements have shown (see below), they are using a combination of purity protocol oats and "cleaned" oats, or straight "cleaned" oats.

"A brand and communications marketing associate responded in part (via email on May 22, 2016), “Bakery On Main’s top priority has always been to provide great tasting products that all those with Celiac Disease can trust and know are safe. We recently decided to soon begin using the mechanically sorted oats in some of our products only due to the fact that the supplier that we will be working with has been third party certified gluten free by the GFCO.” Please contact Bakery On Main for more information."

“For all of our gluten free products, we thoroughly batch test every product in our quality control laboratory upon delivery, during production and after packaging. We adhere to a standard of no more than 19 parts per million of gluten. Should a test show that a product exceeds that limit, it would be simply rejected and made unavailable for distribution to anyone. Every step in the production of our gluten free products is done in a separate gluten free packaging division complete with specialized machinery to make sure that our products maintain their purity.”

Then their oats (note, they use both purity protocol oats and optically sorted oats):

“Oats require special care to ensure that they are safely free from gluten. Bob’s Red Mill only sources from oat suppliers who are committed to practices for eliminating the presence of gluten.

Our suppliers are innovative in controlling the presence of gluten by either avoiding crop rotation with gluten containing grains or using optical sorting technology to remove grain containing gluten. Regardless of our suppliers’ chosen methods for meeting our gluten free specification, we require that each lot is tested and confirmed gluten free before authorization for shipment to Bob’s Red Mill. To ensure that they stay just as gluten free as the day their seedlings sprouted from the earth, we test each batch in our quality control laboratory when they arrive from the farm, during production and once again after they are packaged in our dedicated gluten free facility.”

“Cream Hill Estates sources our gluten-free oats from a mill that successfully uses extensive mechanical and optical sorting to minimize the likelihood of gluten cross-contamination in their products.

The mill uses both select commodity and purity protocol oats and does frequent sampling throughout the process from arrival of the oats at the mill to finished product, and we are satisfied that cleaning, sorting, sampling and testing at the mill produce gluten-content results that are well within acceptable limits for celiac disease (CD) and wheat sensitive consumers, including CD members in our own family.

The mill provides us with test results for each lot number, an 1,800 pound tote bag, and we also do random independent third-party gluten testing of representative samples obtained by us from those totes.

Test results from the mill and from third-party testing are always less than 10 parts per million (ppm) of gluten with the vast majority being less than 5ppm using S-ELISA and R5-ELISA test methodologies.

Our dedicated gluten-free manufacturing and packaging facility in Montreal is also free from any of the top 8 food allergens identified by the U.S. Food and Drug Administration (FDA) and the 10 priority food allergens identified by Health Canada.

As a finished food supplier to consumers and an ingredient supplier to manufacturers, we guarantee the purity of our products.”

16 pouches or tubes are pulled during a production run (approximately 1 pouch or tube every 1⁄2 hour).

Note: Approximately 400,000 single serving pouches are produced during a lot run; 50,000 tubes are produced during a lot run.

A 40-gram sample is taken from each pouch or tube.

The sample is homogenized.

Two extractions are taken from the homogenized sample and tested using the Ridascreen Gliadin R5 ELISA (R7001) Mendez Method.

If any single extraction from any of the 16 pouches or tubes is above 12 ppm gluten the entire lot is discarded.

Since beginning commercial runs, three early runs were above 12 ppm gluten and these lots were destroyed. Since taking corrective action, 25 additional lots have been run. All but one extraction from finished product gluten-free oatmeal tested below 5 ppm gluten; one extraction tested just above the lower limit of quantification of 5 ppm gluten (6 ppm).

UPDATE Jan 20, 2016: In email correspondence, Quaker writes, “we have continued to implement the testing protocol we shared with you for finished product. Out of our last 50 lots produced, we have had one lot test above 12 ppm; as a result, that entire lot of finished product was destroyed. All other lots produced met or exceeded our standards and were released into market.”

This article originally appeared in our January 2016 newsletter. Due to the [unexpected] overwhelming positive feedback, I decided to improve it and post it here.

I hope you find it helpful.

Stay strong & keep moving forward.

Alan KlapperichGIG of ECW Branch Manager

Currently, a gluten-free diet is the only medical treatment for those with gluten-related disorders. There are no alternative treatment options - no shots, no drugs, no surgeries. However, several pharmaceutical companies are working on treatment options, but they are years - if not decades away from being prescribed by your physician.While many find it a blessing their condition can be controlled by a "simple diet" change, others consider it a curse of biblical proportions. It's no secret, transitioning to the gluten-free lifestyle can be tough. [Notice the word - lifestyle. The changes required go far beyond just diet.]

A new lifestyle requires the desire to change, knowledge of how to make the change, and the dedication and motivation to stay the course. Yes, it's quite a departure from the previous lifestyle of eating anything from anywhere at anytime.

Barriers to ComplianceWhen it comes to dietary compliance for the gluten-free diet, there are many barriers that must be broken down:

Time constraints for cooking or preparing food

Misinformation

Lack of knowledge or education (label reading, recognizing gluten)

Lack of cooking skills

Ability to manage emotions: depression, anxiety, fear

Ability to resist temptation

Feelings of deprivation

Gluten-Free food availability (may be hard to find)

Financial restrictions (GF diet can be expensive)

Social pressures

Peer pressures

Travel

Lack of symptoms

Effectiveness of the diet (it doesn’t appear to help)

This list seems almost endless, but unfortunately it's still incomplete.It seems that removing gluten is easier said than done. Give up the foods that you’ve been eating for your entire life? That’s crazy talk!

"Ineed gluten. I can't live without gluten!"

Ironically, a heroin addict might say something very similar. This is not surprising since narcotics and gluten are addictive. Yes, let’s add "addictive" and "withdrawal symptoms" to the barriers of compliance list.Addictive? Withdrawal? Seriously? Yes, yes, and yes. Read on Macduff…

A String of Addictive Pearls

Think of gluten as a string of pearls that must be broken down into individual pearls [known as amino acids].

Humans do not have the enzymes to completely break down gluten into individual amino acids.

Large fragments [known as peptides] of undigested gluten remain after digestion.

While it may be easy to rationalize away gluten cheats as simple, temporary aches and pains or as minor [major] inconveniences - beneath the surface, your body could be gearing up for a civil war that would put Gettysburg to shame.

A 2015 study published by The Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) found that 75.5% of the study participants had adequate gluten-free diet adherence. So what about the other one-fourth (24.5%)? They may be setting themselves up for additional [often serious] medical conditions.

"Changes in lifestyle can be some of the biggest modifications we experience particularly if we have a gluten-related disorder. Transitioning to a gluten-free lifestyle turn our lives upside down. So keep calm and let's get prepared. We're going to delve into the gluten-full to gluten-free metamorphosis and give you the knowledge to make it a successful transition. I want to give you a basic understanding of change and the knowledge to make it a successful transition."

Not necessarily a "how to" piece, but excellent background information is presented. This article is written for nurses and how to best help their patients, but patients can benefit from it as well. It looks as the many factors that influence health-related behaviors as well as several different behavior changing models. Find the method that works best for you.

"Unhealthy lifestyle choices such as smoking and poor diet are significant and preventable causes of long-term conditions. Nurses are well placed to encourage and support patients to make healthy choices. Through good communication, collaboration and goal-setting, behaviour change is possible. This article discusses evidence for the best ways to initiate and sustain behaviour change."

The 2015 holidays are upon us, here is a list of turkeys that are labeled as gluten-free. If a turkey isn't on this list, it may be gluten-free, it just means it wasn't checked.

Some turkeys are not gluten-free. Always, always, always check the ingredient list! If you are unsure, call the manufacturer and ask questions.

Be aware that the US Dept. of Agriculture (USDA) regulates labeling for meat, poultry, egg products. USDA regulations for labeling allergens [like wheat] are not the same as the FDA regulations. Companies may voluntarily comply with FDA regs, but they are not required to disclose wheat, or barley, rye, or oats or any derivatives.

If you see modified food starch, starch, dextrin as ingredients in a USDA product, it's best to call the company to verify the source [are they derived from gluten sources?].

INCREDIBLY EASY GLUTEN FREE TURKEY GUIDENeed to prepare a gluten-free holiday dinner? Butterball can help! Our Butterball fresh and frozen raw unstuffed turkeys are always gluten-free, and our gravy pack included with our Butterball Whole and Boneless Breast items is also gluten-free. And for all the trimmings, check out the recipes below to find a variety of gluten-free side dishes and desserts sure to please all your holiday guests.

** Note: Stuffing a gluten-free turkey with gluten stuffing contaminates the turkey - it should not be eaten by those following a gluten-free/gluten-zero diet.

1. How to Use Serology to Diagnose Celiac Disease Practical Suggestion

2. Can Celiac Disease Be Recognized Endoscopically?

3. What Biopsies Should Be Taken to Evaluate for Celiac Disease?

4. Which At-Risk Patients Should Be Tested for Celiac Disease?

5. How Does One Evaluate for Celiac Disease in a Patient on a Gluten-Free Diet?

6. How Is Celiac Disease Managed?

7. What Should Be Assessed in the Patient With Newly Diagnosed Celiac Disease?

8. How Are Adherence and Response to a Gluten-Free Diet Measured?

9. What Is the Approach to the Nonresponsive Celiac Patient?

10. What Do We Do With Refractory Celiac Disease?

"Celiac disease (CD) is increasingly common and topical for both the general and medical communities; therefore, gastroenterologists will be called on for expertise in this area. How CD is diagnosed has changed over time, and confusion abounds regarding the use and interpretation of diagnostic tests, which are often confounded by adoption of the gluten-free diet (GFD). Herein, we address 10 important things that gastroenterologists need to know about CD, which are based on current evidence and our experience in Mayo Clinic’s Celiac Disease Clinic."

"There are 10 things that all gastroenterologists should know about celiac disease (CD).

1 - The immunoglobulin A tissue transglutaminase is the single best serologic test to use for the detection of CD.

2 - CD can be recognized endoscopically, and water immersion enhances villi detection, although a normal endoscopic appearance does not preclude the diagnosis.

3 - It is recommended that 4 biopsies be taken from the second part of the duodenum and 2 bulb biopsies be taken at the 9 o’clock and 12 o’clock positions to maximize the sensitivity for histologic confirmation of CD.

4 - Consider serologic testing of first-degree relatives, patients with type 1 diabetes mellitus, Down’s, Turner’s, and Williams’ syndromes, as well as those with premature osteoporosis, iron deficiency, abnormal liver biochemistries, and other manifestations of CD.

5 - Patients already on a prolonged gluten-free diet (GFD) should be tested for the presence of HLA DQ2 or DQ8, thereby avoiding the need for further evaluation of CD in non-allelic carriers.

6 - The basic treatment of CD is a strict, lifelong GFD, enabled by an expert dietitian.

8 - All patients diagnosed with CD should have clinical follow-up to ensure response and adherence to a GFD.

9 - In those with persistent or relapsing symptoms, the robustness of the original diagnosis should be reviewed, gluten exposure sought, and a systematic evaluation for alternative and associated diseases performed.

10 - Evaluate those with refractory disease for malignant transformation."

For many, the holiday season is filled with smiles, laughter and lots of merriment. However, for those with dietary restrictions, it can be the complete opposite – fear, dread and lots of worriment.

The risk of getting sick at every meal is a huge source of stress and concern. Now let's pile on the stress of family dynamics. We've got the fixings for an epic family battle royal. "Let's get ready to rumble!"

“My family puts the FUN in dysfunction”

I'm sure many can relate to the quote above. If you feel your family is the poster child for dysfunction, do not worry. All families are dysfunctional, it's simply a matter of degree.

Since the dawn of time, our existence has revolved around the acquisition and sharing of food. We have evolved and times have changed, but the primal need to gather and share food with members of our clan still remains. Holiday celebrations are a perfect example of that.

If we dig deep inside and look beyond the medical necessity of our food requests, we will find an emotional component. Our requests are an extension of ourselves. When our family and friends fail to acknowledge our food requests, we feel it as exclusion and rejection of us as a person. Maybe it is, maybe it isn't. Sometimes it's hard to tell what is inside the hearts and minds of our loved ones. I suspect the reasons are many and varied. Perhaps it is fear? Maybe they are afraid to try because they don't want to make us sick? Maybe we've yelled at them one too many times about food selection or preparation? What can we do? We have to talk to them.

Opening up a line of communication is so important when it comes to resolution. Having a calm, heartfelt conversation about our health concerns and what it takes for us to be healthy and happy is the best chance we have at getting them to understand. It is up to us to kindly and respectfully educate them on how to do things correctly, no one else will do it.

I invite you to read this informative article on Confrontations vs Conversations from PsychCentral: http://bit.ly/1GQw2q1 It offers some great insights…

Confrontations are usually fueled by anger.Conversations are fueled by curiosity.

Confrontations have an aura of a judicial proceeding.Conversations frame a problem as something to be solved.

Confrontations have an element of moral superiority.Conversations happen between equals.

Confrontations shield the confronter from any responsibility.Conversations say “we’re in this together.

For us today, gluten-free comes as easy as breathing, but it wasn't always that way. We were frustrated and confused, it's reasonable to expect family members will feel the same way. However, their behavior may appear to us as stubborn, unyielding, or uncaring. Remember, listening is a critical component of communication.

Despite our best efforts, we may have to accept the fact that some people just won't get it. This does not mean we can give up, however! Let's face it, we're up against years, decades, or in some cases centuries of traditions. The very definition of tradition allows it to brazenly flip Change, the bird.

Trə-ˈdi-shən: a way of thinking, behaving, or doing something that has been used by the people in a particular group, family, society, etc., for a long time.

"What?! No stuffing inside the turkey? Great-Great Grandma Brunhilde would turn over in her grave if we didn't use her recipe!" Changing family traditions is downright heresy. Remember, to your family, gluten-free will be the new kid on the block. Situations like this call for the utmost patience. It may take some time for this concept to percolate through their brains and become a newly added family tradition. Don't panic, stay calm, and keep the lines of communication open. Keep up your educational efforts even if its only small tidbits here and there. Sometimes it's best not to flood them with information – ever try to drink from a fire hose?

I wish I had one simple answer that would solve every gluten-free holiday and family situation, but I don't. If I did, my name would be Dr. Phil and I'd have a TV show.

Bottom line – if you cannot resolve any of the food issues, try to put that aside and focus on the people that love and care about you – that is what really matters. Here are some tips to get you through the holiday season.

If you are brand new to the gluten-free lifestyle, it might help to have some basic information. Please see GIG of ECW's Gluten-Free Diet Boot Camp article: http://bit.ly/GIGECW_GFBootCamp

Plain turkey is most generally gluten-free. Read the labels to verify. Several brands will now say "Gluten-Free" or "No Gluten". Make sure it has not been pre-seasoned or marinated; seasonings and marinades may contain gluten. Some turkeys will have a gravy packet. Verify the GF status of the gravy before using. Better yet, ditch the gravy packet and make your own...you'll be glad you did!

Like turkey, most hams are GF [read the label], however if it has a glaze, it must be checked.

If the turkey has been stuffed with gluten stuffing, do not eat the turkey, it's been contaminated.

Stuffing [gluten-free or not gluten-free] made inside the turkey is a food safety concern. If you cook the turkey long enough to properly cook the stuffing [to a temperature of 165], the turkey is dry and over done. If you cook the turkey until it's done, the stuffing may not have reached the food safe temperature of 165. Either way, it's not good eats. Make the turkey and stuffing separately.

Cooking bags are commonly used to help keep meats moist. However, the instructions state a tablespoon of flour should be added to the bag and shaken. The flour prevents the bag from exploding. Ask your host about this ahead of time. FYI - cornstarch or gluten-free flour will work too. [I never knew about exploding bags, we always use a bag and never put flour in it.]

Mashed potatoes, a GF piece of cake, right? Not so fast, some recipes call for a bit of flour [oh the humanity!]. Scalloped Potatoes is another dish that more than likely has wheat flour. FYI, some potato salad recipes also call for flour. If you don't know how the host prepares their potatoes, it's best to ask.

Mainstream "cream of" soups are not gluten-free and so are any dishes made with them, [think Green Bean Casserole].

Progresso offers their Cream of Mushroom soup, but it's not quite as condensed as actual condensed soup, but with some slight recipe modifications it can be used.

Cornbreads or corn muffins often times have a mixture of cornmeal and wheat flour. There several mixes that are available. Krusteaz brand has a pretty good cornbread mix that's available in mainstream grocery stores. http://bit.ly/1pAUT9P

Be wary of communal chip or veggie dips. They might not be GF and they could be contaminated due non-GF snacks.

BYOF (Bring your own food). Bringing a dish to pass ensures you'll have something you know is safe. We may feel a bit guilty about asking others to go out of their way to accommodate our requests. Good news! We have the ability be part of the solution instead of the problem. Politely ask the host what you can bring. Ask them to allow you to help. Let them know you want to ease their work load and worry-factor - not add to it - when it comes to making something safe for you. It helps to know what's on the menu so your dish will fit in with the others. Tip: Make sure you bring plenty for yourself and others.

Open a line of communication early. It's a delicate topic, but you have to discuss GF food selection and cross contamination concerns with the host if they are not familiar with preparing gluten free dishes. Because they are not immersed in the gluten-free lifestyle, they'll need your help to educate and guide them. The education process is not a "once and done" event, it occurs over time. This is not on their radar 24x7x365, so they will need gentle reminders. Sometimes it's hard for people to grasp, so please be patient if they don't get it right away.

Enlist the help of an ambassador. Sometimes it's easier to have another person to be an advocate for you. Ask a brother-in-law, sister-in-law, aunt, uncle, or cousin that you trust to help the host find gluten-free options for you. The more family members you have on your team the easier it will be.

Make sure the hosts know that you appreciate their efforts. Thank them, thank them and thank them again.

Eat [at least something] before you leave home, it takes the edge off of your hunger.

If you like to cook, host the celebration yourself. This gives you ultimate control. If the guests ask to bring something, request things that are naturally gluten-free. Veggie tray, fresh fruit tray, an undressed salad, a bottle of wine or other beverages (not beer unless it's GF), vanilla ice cream (suggest a good brand). Don't be afraid to suggest non-food items: festive napkins, folding chairs, family favorite tableware, etc.

If guests do bring gluten items, have a designated area for GF and NGF dishes.

Inspiration for this article goes to:

Quick Guide to Holiday Family DiningCelebrate Gluten-Free Newsletter Fall 2014Gluten Intolerance Group of North Americahttp://bit.ly/GIG-Membership

As my twelfth gluten-zero Thanksgiving celebration draws ever nearer, I can't help but think back. Honestly, I cannot remember the exact details of my first gluten-zero Thanksgiving. I'm sure I was a jumble of nerves. I was only 6 months gluten-zero, still trying to get a handle on all of this, not 100% confident in my food choices [no labeling regulations existed in 2003], worried I'd get sick, and then try to explain all of this to family members. GULP!

I have been graciously blessed and my heart is filled with much gratitude and thanks. I have an amazing wife that has always supported and believed in me, even when I doubted myself. Without her, I would not be what I am today.

I have the best family and friends. They respect my choices and always watch out for me.

The members of GIG of ECW and the gluten-zero community in general. It's you, my peeps, that inspire and motivate me, keep driving me forward as a human being and support group leader.

"The meaning of life is to find your gift. The purpose of life is to give it away." ~ Pablo Picasso

I am eternally thankful for what Melissa Diane Smith calls “The Gift of Gluten-Free”. All those years ago when I was lying on the living room floor in the fetal position, I could not have imagined what was in store for me [besides death]. I gave up gluten, but what I have received in return is beyond measure.I realized that I was given an opportunity to use my skills and talents to help others. Heck, there were talents that I didn't even know I had! The biggest item unearthed in me was a passion – a purpose – something that was lacking in my life previously. I was given a gift, and I was shown how to give it away. It was a profound awakening.

I invite you to think about your gluten-zero life and list the items for which you give thanks. Consider all aspects of your life – physical and mental health; your relationship with friends and family members; your eating habits; your spiritual practices [things that feed your soul]. You might be surprised at the number of items you have on the list! I also invite you to inventory your gifts and find out what can be given away. What you receive in return may rock your world. You won't know until you try.Stay strong. Be well. Your humble servant,Al Klapperich – GIG of ECW Branch Manager

The 2014 holidays are upon us, here is a list of turkeys that are gluten-free. If a turkey isn't on this list, it may be gluten-free, it just means it wasn't checked.

Always, always, always check the ingredient list! If you are unsure, call the manufacturer and ask questions.

Be aware that the US Dept. of Agriculture (USDA) regulates labeling for meat, poultry, egg products. USDA regulations for labeling allergens [like wheat] are not the same as the FDA regulations. Companies may voluntarily comply with FDA regs, but they are not required to disclose wheat, or barley, rye, or oats or any derivatives.

If you see modified food starch, starch, dextrin as ingredients in a USDA product, it's best to call the company to verify the source [are they derived from gluten sources?].

INCREDIBLY EASY GLUTEN FREE TURKEY GUIDENeed to prepare a gluten-free holiday dinner? Butterball can help! Our Butterball fresh and frozen raw unstuffed turkeys are always gluten-free, and our gravy pack included with our Butterball Whole and Boneless Breast items is also gluten-free. And for all the trimmings, check out the recipes below to find a variety of gluten-free side dishes and desserts sure to please all your holiday guests.

** Note: Stuffing a gluten-free turkey with gluten stuffing contaminates the turkey - it should not be eaten by those following a gluten-free/gluten-zero diet.

The intent here is not to bore you with medical mumbo jumbo [WARNING: medical mumbo jumbo lies ahead], but the takeaway here is simply this:

Gluten has been shown to affect mood, behavior, and cognitive function.

"The gut is not like Las Vegas. What happens in the gut, does not stay in the gut." ~ Dr. Alessio Fasano

Remember, gluten can affect any, and every organ in the human body – the brain and nervous system are not exempt – even without the presence of celiac disease. Science & medicine are discovering more connections as time goes on.

The statistics for mental illness in the United States are staggering.

One in four [25%] adults experience mental illness in a given year.

One in 17 [approx 6%] live with serious conditions like: schizophrenia, major depression, bipolar disorder.

Approx. 1.1% of adults live with schizophrenia.

Suicide is the tenth leading cause of death in the US (more common than homicide) and third leading cause for ages 15 to 24 year olds.

More than 90% of those who die by suicide had one or more mental disorders

In 2010, the Center for Disease Control reported 38,364 suicides per year – about 14% more than motor vehicle crashes.

$193.2 billion – Lost earnings per year due to mental illness.

Veterans account for 20% of suicides. 22 per day.

Mood disorders (like depression) are the third most common cause of hospitalization for youth and adults 18 to 44.

You can find more mental illness statistics in this document from National Alliance of Mental Illness: http://bit.ly/1sMndpF

After looking at those statistics, sadly, I suspect just about every family has had some experience with mental health issues in some form, be it directly or indirectly. I am no exception. My father was a diagnosed Paranoid Schizophrenic. Like many, he was not compliant with his medication regimen nor did he seek on-going professional help. The consequences of his choices are still rippling outward today, almost 50 years after his suicide. I will always wonder if removing gluten would've altered our family's history; without question it has altered my future.

Most mainstream medical professionals do not associate gluten with neurological/behavioral disorders. This is unfortunate because Dr. Marios Hadjivassiliou, Professor of Neurology at Sheffield, UK Teaching Hospitals, stated in 2002,“Gluten sensitivity can be primarily and at times exclusively a neurological disease.” http://bit.ly/1qXJdf3

Dr. Hadjivassiliou has done extensive work with a neurological condition called Gluten Ataxia. This condition is characterized by the loss of balance and coordination, visual disturbances, tremors, difficulty in walking. Living Without Feb/March 2011 has an excellent article on this topic - http://bit.ly/1u24c0q

Dr. Hadjivassiliou is not alone in his discoveries. Dr. Rodney Ford, a Pediatric Gastroenterologist/Allergist from Christchurch New Zealand, wrote this medical hypothesis paper in 2009 titled - “The Gluten Syndrome: A Neurological Disease” - http://bit.ly/1tkM58j

“Gluten can cause neurological harm through a combination of cross reacting antibodies, immune complex disease and direct toxicity. These nervous system affects include: dysregulation of the autonomic nervous system, cerebella ataxia, hypotonia, developmental delay, learning disorders, depression, migraine, and headache. If gluten is the putative harmful agent, then there is no requirement to invoke gut damage and nutritional deficiency to explain the myriad of the symptoms experienced by sufferers of celiac disease and gluten-sensitivity. This is called ‘‘The Gluten Syndrome” ~ Dr. Rodney Ford.

Dr. Ford has devoted an entire book on the subject of gluten's effect on our brains. I highly recommend “Gluten Brains” - http://bit.ly/GlutenBrains

“Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity”was published in Psychiatric Quarterly in March 2012 and contains a great summary of a variety of gluten-related conditions. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/

Neurologic Complications include:

Gluten Ataxia

Epilepsy and Seizure Disorders

Peripheral Neuropathy

Inflammatory Myopathies

Myelopathies

Headache

Gluten Encephalopathy (Brain Damage)

White matter abnormalities

Psychiatric Complications include:

Anxiety Disorders

Depression and Mood Disorders

Attention Deficit-Hyperactivity Disorder (ADHD)

Autism Spectrum Disorders

Schizophrenia

The Celiac Disease Foundation created an excellent resource on celiac disease (and non-celiac wheat/gluten sensitivity) and mental health. It's meant to be shared with healthcare providers.

A wide range of psychological problems can arise for those with untreated celiac disease or non-celiac wheat sensitivity. Initially there may be a misdiagnosis of psychiatric illness due to some of the neurological and psychiatric symptoms that can be seen in untreated disease. Once diagnosed, there may be difficulty adjusting to a new diagnosis of chronic illness and adherence to a gluten-free diet."When a Mental Health Referral Is NeededA wide range of psychological problems can arise for patients with untreated celiac disease or non-celiac wheat sensitivity. These can include difficulties adjusting to a new diagnosis of chronic illness as well as dealing with adherence to a gluten-free diet and other aspects of disease management. Protracted duration of emotional or behavioral symptoms, greater severity of symptoms, and/or significant impairment in functioning are indicators of potential need for mental health treatment. These include:

• Finding little or no pleasure in life • Feeling worthless or extremely guilty • Crying a lot for no particular reason • Withdrawing from other people • Experiencing severe anxiety, panic or fear • Having big mood swings • Experiencing a change in eating or sleeping patterns • Having very low energy • Losing interest in hobbies or pleasurable activities • Having too much energy, having trouble concentrating or following through on plans • Feeling easily irritated or angry • Experiencing racing thoughts or agitation • Hearing voices or seeing images that other people do not experience • Believing that others are plotting against you • Wanting to harm yourself or someone else

When A Medical Evaluation Is NeededInitially those with celiac disease or non-celiac wheat sensitivity may be misdiagnosed with a psychiatric illness due to some of the neurological and psychiatric symptoms that can be seen in untreated disease including:

The Celiac Disease and Gluten-Related Conditions Psychological Health Training Program was created by the Children’s National Health System in partnership with Celiac Disease Foundation, and was made possible by a generous grant from the Resnick Family. This continuing education program provides a tool kit for medical and mental health practitioners to identify and treat patients living with celiac disease and other gluten-related conditions.Watch the Psychological Health Training Program Webinarhttp://bit.ly/2hI3QgT

Psychological Health Manual

Available both as an interactive manual and as a pdf document, the goal of this manual is to increase medical and mental health providers’ awareness of celiac disease and non-celiac wheat sensitivity in pediatric populations. However, it’s lessons apply to adult populations, and is a useful tool for patients and caregivers to better understand the disease.Read the Psychological Health Training Program Manualhttp://bit.ly/2iwf2wV

Depression

Depression is a medical condition that interferes with daily life; affecting thoughts, feelings, behavior, mood and physical health for extended periods of time. Some people may only have one episode of major depression in their lifetime, but often times it is a recurrent issue.

In celiac disease, nutritional deficiencies from intestinal damage may also contribute to depression. Lack of B-vitamins, specifically B-12 and folic acid have been linked.

Reports of depression in those with celiac disease began appearing in the 1980s. In 1982, a Swedish study reported “Our results suggest that depressive psychopathology is a feature of adult coeliac disease and may be a consequence of malabsorption” http://1.usa.gov/W3jKEB

A 1998 study shows about one third of diagnosed celiac patients also suffer from depression. Celiac adolescents have higher than normal rates of depression (31% vs 7% of adolescents without celiac). http://bit.ly/1qUGi2S

A large Swedish study published in 2007 compared almost 14,000 celiac patients against almost 67,000 healthy people. Researchers found that celiacs are 80% more likely to experience depression than the general population. They also looked at the celiac-depression relationship in reverse. They found those with depression had a 230% increased risk factor of having celiac disease. http://1.usa.gov/1pApGlN

Women with celiac disease have higher rates of depression than the general population. The risks were highest in those that were not compliant with the gluten-free diet. Even when compliant, women still had higher risks of depression over those without celiac. http://bit.ly/W3nKoE

According to Dr. Tom O'Bryan, children have a 40% increase risk of suicide. Those children with intestinal inflammation [no villi damage yet] have a 96% increased risk. http://bit.ly/1rJ7wjo

Adults diagnosed with celiac disease and/or intestinal inflammation have increased suicide risks as well. Another large study published in 2011 from Sweden shows those with with celiac disease [intestinal damage] had a 55% increased risk factor. Those with intestinal inflammation [no villi damage] had a 96% increased risk. http://1.usa.gov/Z4DFFk

More Gluten & Depression Studies

“A study has now demonstrated that gluten is independently associated with depression in patients with NCGS.” - http://1.usa.gov/1tZiAqc

“Lifetime depressive symptoms may be present in one third of the CD patients who adhere to gluten-free diet. Long-term adherence to the gluten-free diet may reduce the risk of current depressive symptoms.” - http://1.usa.gov/1qqWZpe

Schizophrenia

Schizophrenia is a brain disorder that distorts thinking, behavior, emotions, the perception of reality. Delusions [believe people are try to control them or plotting against them] and hallucinations [hearing voices] are common symptoms.

There have been observations of Schizophrenia and gluten dating back to the 50's & 60's – also known then as “Bread Madness”.

In 1953 Dr Lauretta Bender started seeing increased incidences of celiac disease in those with childhood schizophrenia.

In 1961 Harold Graff, M.D. and Allen Handford M.D. published the case study, “Celiac Syndrome in the Case Histories of Five Schizophrenics”, about five patients with a history of schizophrenia and celiac disease who happened to be admitted to the same psychicatric hospital over the course of 365 days. A most curious observation in facility that had few admissions over the course of a typical year. http://bit.ly/1uFm56w

Dr. F. Curtis Dohan spent most of his career drawing connections between wheat and schizophrenia. He too noticed a number of patients with schizophrenia also had celiac disease – potentially 50 to 100 times the rate that would be expected by mere chance. Beyond these connections, he reported that a gluten-free diet improved some of the newly diagnosed schizophrenics, but not all. 2 out of 17 improved. http://bit.ly/1nhCHLw

In 1966 Dohan published “Wheat Consumption and Hospital Admissions for Schizophrenia During World War II”. He analyzed the the decreases in hospital admissions for schizophrenia during the wheat shortages in Finland, Norway, Sweden, Canada and the United States during World War II. http://bit.ly/1q0nRxU

Like many pioneers in their field, Dohan was often ridiculed and marginalized for his work [opioid research in mental illness], but he continued publishing his findings. Dohan also demonstrated that schizophrenia was almost non-existent in South Pacific cultures where little to no grains were consumed. When those cultures began to westernize their diet with the consumption of wheat, barley beer, and rice, the prevalence reached European levels. http://1.usa.gov/1wYpKja

Did Dohan find a “scientific smoking gun” linking gluten and schizophrenia – not exactly according to some experts, but his work is now proving to be quite interesting and now beginning to be validated.

It has only been over the last decade or so that experts have shown gluten's effects on the nervous system. Even to this day experts are still looking indisputable evidence connecting the two conditions.

In 2012, another study revealed that people with schizophrenia are much more likely than the general population to have an immune response to gluten. When those with schizophrenia and a documented immune response to gluten tried a gluten-free diet, they got better. These results are very promising for those suffering from a neuro-degenerative condition where little else works.

Not everyone with schizophrenia will see improvements on a gluten-free diet. New research is indicating about 20% may experience measurable improvements. Dr. Alessio Fasano's team have found that roughly 1 in 5 patients with schizophrenia have elevated levels of tTG6 (a new marker indicating gluten-sensitivity). Those patients put on a gluten-free diet were able to control their condition without medication. Promising results indeed!

More Gluten & Schizophrenia Studies

“Gluten Sensitivity and Schizophrenia” a PowerPoint presentation by Deanna Kelly, Pharm.D, BCPP Professor of Psychiatry at Univ. of Maryland School of Medicine.http://bit.ly/2f4x8pv

“A drastic reduction, if not full remission, of schizophrenic symptoms after initiation of gluten withdrawal has been noted in a variety of studies. However, this occurs only in a subset of schizophrenic patients.” - http://bit.ly/2kIpUtQ

“Five biomarkers of gluten sensitivity were found to be significantly elevated in patients with non-affective psychoses (schizophrenia) compared to controls.” - http://1.usa.gov/1vXlWL1

Al KlapperichBranch ManagerGluten Intolerance Group of East Central WI

“Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma - which is living with the results of other people's thinking. Don't let the noise of other's opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition." ~ Steve Jobs

The Gluten-Free RN shared this quote on Facebook. Yes, Facebook can be useful and is not a complete waste of time. Steven's words struck a very loud chord in me, much like the startup chime of the Apple Macintosh that Steve Jobs created. The late Steve Jobs imparted this bit of wisdom to the 2005 graduating class of Stanford University. Regardless of Steve's intended audience, I feel these words are quite useful for the gluten-free/zero community, even almost a decade later. Steve Jobs was a visionary on many levels.

Members of the gluten-free/gluten-zero community have endured a good bit of bashing as of late. Considering the increase in mainstream awareness, I suppose some abuse might be expected. Late night talk show hosts airing "Man on the street" interviews asking "What is gluten?" - with embarrassingly incorrect answers. Improperly researched and inaccurate information published in newspaper/magazine/ internet blogs, social media sites like Facebook/Twitter/Tumblr allowing anyone to offer up their [educated and uneducated] opinions on such topics. We can't forget those closest to us - sometimes they can be our toughest critics - perhaps thinking we're just being trendy, wanting attention or special treatment. Yeah, right, we're nothin' but drama queens...

Add to this cacophony, the mainstream medicine dogma that still exists when it comes to gluten-related disorders. Even though celiac disease is one of the most common life-long disorders, it's still vastly under diagnosed; and don't even get me started on Non-Celiac Gluten Sensitivity. Healthcare professionals do not recognize the "clinical chameleon" that sits in their exam room. The medical community has come a long way, but many are still behind the times holding fast to what they were taught in medical school - celiac disease is rare and only presents with weight loss and diarrhea. You and I know this is total crap [pardon the pun].

Many in the community will be able squelch all the negativity going on around them. You, who are active in a support group, and those that have properly educated themselves have gone through an annealing process to harden your resolve. I do worry about those that are just starting their journey back to health. For certain, all of that negativity can be emotionally taxing and mentally distracting. Lord knows, I get tired of it. Do they have enough knowledge and commitment to stay the course? Blocking those external voices could mean the difference between success and failure.

Mr. Jobs was right - our time is limited, and we need to maximize every second we are in an earthly-form. "Sick, tired and grumpy" is not the way to go through life. We need to focus on the positive, stand up and advocate for ourselves when it comes to our health. We must block out the noise that can overpower our inner voice - the voice that tells us what it takes to keep our bodies happy and healthy.

I will leave you with these 5 daily disciplines to stay in a positive state of mind.

“Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients”BMC Gastroenterology 2013, 13:40 - http://bit.ly/12vSGuD

Researchers at Johns Hopkins and Center for Celiac Research at Massachusetts General looked at cross contamination of gluten-free products found in a traditional gluten-free diet. They studied 17 patients who had Non Responsive Celiac Disease (NRCD). 6 of these patients met the criteria for Refractory Celiac Disease (RCD).

NRCD is a general classification term for patients with persistent symptoms and/or intestinal damage despite following a gluten-free diet.

RCD is a subset of NRCD. RCD is found in adults; middle-aged to elderly. It's never seen in children. In most cases, failure to improve on a gluten-free diet is not RCD. RCD is also further broken down as RCD1 and RCD2. RCD2 has a higher risk of developing intestinal cancer and 5 year death rate of 50-60%.

Participants of this study were put on a Gluten Contamination Elimination Diet (GCED) for three to six months. This diet consists of whole, unprocessed foods. It was designed to eliminate exposure to any possibility of gluten cross contamination from packaged/processed foods – including those labeled gluten-free. Patients were given sample menus and were asked to keep a food record.

14 of the 17 patients experience resolution of their symptoms and normal blood/biopsy results on the GCED.

11 of the 14 successfully returned to a traditional gluten-free diet without return of symptoms.

Of the 3 patients that could not return to traditional gluten-free diet - one had a return of symptoms each of the three times they tried to return.

5 of the 6 patients with RCD has full resolution of their symptoms and no longer met the criteria for RCD

The important take away from this study has to do with ferreting out those that truly have Refractory Celiac Disease. Due to the seriousness of RCD, it is important accurately diagnose this condition.

The researchers found it interesting that 79% of the test subject were able to return to their traditional gluten-free diet.

“Interestingly, the fact that the majority of the patients in our study were subsequently able to return to their previous strict GFD suggests that there is a degree of recovery that, once established, shifts these patients back to a more typical threshold of gluten reactivity.”

While the researchers commented on the ability to return to a traditional gluten-free diet, they didn't really discuss this aspect. It certainly raises several questions.

1) Once healed, why where most patients able to resume the traditional GF diet?

If you are new to the gluten-free/gluten zero lifestyle, you've probably already figured out that navigating it isn't always easy.

So many changes, so many details to remember; enough to make your head spin 'round-n-round. It's no wonder there is fear, dread and confusion.Label reading skills are on the "must have" list in order to be successful. [Sorry, this will not be a How to Read Labels article; I'm saving that for another time, but you can learn more about reading labels here and here]

If you wish to by-pass almost all labeling reading - stick to single-ingredient whole foods. Fresh fruits and veggies, plain meats, seafood and poultry. Ever see an ingredient label on a head of broccoli? By far, this will be your best and most healthiest option.

However, in the event you find yourself in the packaged food aisles reading labels, you'll run into some strange and confusing ingredients. You'll need to know what they are and if they are gluten-free. Keep in mind, if the ingredient is gluten-free, it does not mean that it's healthy for you. Choose wisely!

*Ground spices have been undergoing some investigation as of late. While single spices are inherently gluten-free, testing is beginning to show that various levels of contamination can be found - even if the spices are processed in a facility without gluten [they are presumably coming in contaminated].

I'm sure we've all been in similar situations. We meet someone - they find out we are gluten-free - they excitedly tell us they are “gluten-free, most of the time” or “cutting back on gluten” or “using gluten-free to lose weight”. Phrases and attitudes like that usually are enough to make our blood boil. Don't they know how serious this is? This is not just another fad diet. Don't they realize they can't pick and choose when to be gluten-free or only when it's convenient? Don't they know this type of behavior is bad press for those that really need to be gluten-free? “Bang – Zoom! You're going to the moon!”

Those of you who have been gluten-free for any length of time, think back to when you first went gluten-free. How many people had even heard about gluten/celiac disease/Non Celiac Gluten Sensitivity/gluten-related disorders? Right, not very many. Fast forward to today, we're seeing gluten-free everywhere. So much in fact that it's being called *gasp* "a fad diet". We, the gluten-free community have been wanting mainstream recognition for a long time. It may not be in the exact form we were hoping for, but GF is now mainstream!

It's also clear that many people are misinformed and some are probably eating gluten-free for all the “wrong” reasons. Most certainly some confusion is being generated by the “gluten-free dabblers” [those that are experimenting]. Yes, there is a bit of turbulence, but we need to control it best we can and ride it out. The current environment may not be optimal, but I think we are seeing “growing pains” as our society comes to grip with gluten and its effects. Things are in a state of flux right now. The packaged food industry, hospitality industry, food service professionals, health care professionals are all trying to figure out how to deal with the gluten-free phenomenon. We know all too well that some are doing better than others at navigating the uncharted gluten-free waters.

As the researchers keep digging, they keep finding more evidence of harm that gluten is inflicting. Americans have shorter life spans and more illnesses than other comparable high-income countries. It's no secret that on average, we are an unhealthy nation. People are sick and tired of feeling sick and tired so they seek out solutions. Some are willing to take matters into their own hands because many of the medical professionals have some catching up to do when it comes to gluten-related disorders.

pro-cess:a series of actions or steps taken in order to achieve a particular end.

Let's take a look at this situation in a different way. I think we can all agree that the path to gluten-freedom is a process. We didn't wake up one morning with this all-encompassing knowledge about gluten-free. It took time for us to build our knowledge base. We all had a starting point; we all took our wobbly first steps.

“The journey of a thousand miles begins with a single step”

~ Lao-Tsu, Chinese Philosopher

What if this is a dabbler's first step in their journey? After my biopsies came back negative, I decided to do dietary trials, I went off and on gluten several times over three or four months in order to figure out what was going on. Yup, I was a “GF dabbler”. However, once I figured out gluten was an issue for me, it was hasta la vista, baby! It's been over 10 years since gluten has intentionally touched my lips.

Even though people may be misinformed or have a misunderstanding as to why they are trying gluten-free, they may unexpectedly realize relief from other physical ailments. They might have a “light bulb” moment that could be life-altering for them, their children and future generations of their family.

As frustrating as some of our encounters may be, perhaps being supportive is the best role for us to play. While we may never fully understand or know the true intent of those seeking answers by experimentation, don't they deserve the benefit of the doubt? If I hadn't received support before, during and after my trials, things might have turned out differently. What if we are the only supportive people they encounter while doing this?

Those of us that live this 24/7/365 are the ambassadors of the gluten-free lifestyle. It is our responsibility to educate the masses. If not us – who will? For certain this is a Herculean task, but at least it's easier than herding cats.

“Actions speak louder than words”

There are leaders and those who lead. Leaders typically hold a position of power or authority. Those who lead have the ability to inspire without power or authority. We only need to look to Mahatma Gandhi, Martin Luther King, Jr. and Nelson Mandela as perfect examples of those who lead. We may not possess that amount of fame, but that's the beauty of "those who lead" - we don't need it. Each one of us can inspire others simply by leading by example. We chose not to be a victim; not to give up and say "I can't do this gluten-free thing, it's too hard". We chose to be successful. Every time we opt out from an opportunity to cheat, we show others that we take our health and lifestyle seriously. Indeed our actions can speak louder than words.

...but words are still important

Every day we can find gluten free teachable moments, they're all around us. A simple and polite "No thank you, I am gluten-zero because the gluten in those donuts make me sick" when the quickie-mart employee asks if we want 3-for-a-dollar donuts as we pay for gasoline. How about a respectful interchange of facts with those that are "gluten-free most of the time". Better yet, invite them to a local support group meeting, so they can really learn what gluten-free is all about. Sharing educational information with your health care team members [doctor, dentist, pharmacist, etc]. Speaking to food service professionals about gluten-free dining options [or lack there of]. Bringing a plate of your killer peanut butter cookies to [anonymously] share at work; specially for that co-worker who turns up their nose at your "icky gluten-free food". Of course, you don't tell anyone they are gluten-free until Mr/Mrs Food Snob proclaims them as "The Best!". Ah sweet justice.

Gluten-free awareness is continuing to grow, but we need everyone's help. In order to raise awareness properly, everyone in the gluten-free community must keep educating, motivating and advocating.

I often get asked for information on celiac disease and gluten-free. Either it's someone that is just starting to investigate gluten as the source of their health issues, or it's someone that is just newly diagnosed and looking how/where to start. So, I gathered up a bunch of resources and created this document. The original Gluten-Free Diet Boot Camp was created in 2005. What you see here is an updated version of it.

I am throwing A LOT stuff out here, please don't let it overwhelm you. If your head starts spinning, stop reading for awhile. While it may be very confusing to you right now, please know that it does get easier - it really does.

Note: If you have not completed testing for celiac disease, please do so before going further. Why? One must be consuming gluten for the tests to be accurate.

You’ve been told you must go gluten-free and think, “What am I going eat?”. The more you think about it, you realize how monumental this is going to be. When faced with a large task I like to break it down into smaller, more manageable chunks. Focusing on smaller tasks makes this process much less overwhelming. Don't pressure yourself into trying to learn everything in one day.

The most important tool you can have when dealing with this is KNOWLEDGE. Knowledge means health. The more you know (about yourself, about your food, about this condition), the better you will feel.

Step 1 - Stay Calm. Try not to panic, this is not the end of the world. While it will take some time for you to settle into the GF lifestyle, it is very do-able. With a bit knowledge and a bit of planning, you will be successful. You are not alone, people all over the world live this way. Currently, it is now easier to maintain a gluten-free lifestyle than any other time in history. For better or worse, gluten-free has made it to mainstream awareness. While there is room for improvement, things are going in the right direction. Gluten-free options are plentiful, but, they are not always healthy. Gone are the days of 20 years ago when it was the rice and banana diet. Fear not...you will not starve! There are many foods that are naturally gluten-free - and darn tasty!

Be aware, that you may go through a grieving process. Leaving your old lifestyle behind will be an emotional experience - a roller coaster ride for sure. This is common, normal and healthy. Do not suppress these emotions - recognize them and deal with them.

Step 2: Identify & remove the obvious foods from your diet. This is usually quite "easy" to do. I don't mean emotionally or physically easy to do, but easy to identify. Gluten is generic term for the proteins found in wheat (durum, graham, kamut, semolina, spelt), barley, rye & triticale (hybrid of wheat & rye). Any product made with or contaminated by these ingredients is off-limits - breads, crackers, cereals, pasta, pizza, cakes, pies, cookies, many soups, etc. Don't forget beer.

The best (and simplest) recommendation I can give you when going gluten-free (GF)...stick to single-ingredient,"whole" foods.

Whole foods are foods that have little or minimal processing done to them. Anytime a food is processed, there's a good chance gluten is added to it either by design or by accident [cross contact].

Think fresh fruits and veggies, plain meats, poultry, seafood, eggs.

Avoid products with marinades, sauces or seasonings-they may contain gluten.

Finding gluten in a head of lettuce or a bunch of carrots is pretty hard to do. After you start to feel better you can branch out a bit more in to the processed food if you wish, however I know many people stick to the whole foods.

Tip: shop the outside perimeter of the store. Usually this is where you find the produce, eggs, plain meats, etc.

Tip: Stick to foods with short ingredient lists - the shorter the better. It's better for you and requires much less reading. The best - single ingredient foods.

Step 3: Look for hidden gluten. This may take you some time for figure out. You WILL become a label reader. In order to stay healthy you will need to check every ingredient in every product you come in contact with - both ingested and topical. Be prepared to spend a couple of hours getting groceries. It will take that long due to label reading. After you read a few labels, you'll know why I suggested focusing on whole, single ingredient foods. Processed foods are a minefield when it comes to reading labels to determine if there's gluten. Not much to read on a head of broccoli, a bag of carrots, a head of lettuce, etc.

If you do buy processed/packaged foods check the ingredient label. If you see any of these words: Barley, Malt, Malt Flavoring, Malt Vinegar, Rye, Triticale, Wheat (Durum, Graham, Kamut, Semolina, Spelt), Brewer's Yeast - put the product down. If you can't tell from the ingredient list, call the manufacturer and ask them. Also look for a gluten-free certification. This seal tells you the manufacturer has specific standards, policies & procedures for making gluten-free foods. If you are unsure about a product, don’t eat it.

Avoid commercial or mainstream oats [think Quaker Oats] or products that use them because they can have high levels of gluten due to cross-contact. Pure, uncontaminated gluten-free oats can be tolerated by many, but for right now - this minute, no oats. Those new to gluten-free should abstain from oats for at least one year. Oats have been controversial for decades, please look at all the information before you decided to add oats to your diet. Please see our Oats section below for more information.

If a gluten-free food has cross contact with gluten, it’s off-limits. It only takes a crumb for many to get sick. Crumbs matter? Yes crumbs matter! It only takes a small amount of gluten to put your body into an inflammatory state.

ZERO gluten should be the ultimate goal for everyone following a gluten-free diet.

The best thing to do is go on a cleaning spree. Remove everything from your cupboards. Toss the gluten filled/contaminated junk and meticulously clean everywhere with hot soapy water - changing it often. Even move the stove and fridge!

A gluten-free diet is not like a diabetic diet where you can balance it out. There is no room for cheating. Everyone one will have different sensitivities to the gluten they might ingest. Some may be dreadfully sick for days/weeks from the smallest crumb. Others, may only have reflux, gas, bloating. Some won't have any reaction at all! Even though you may not be able to feel the effects of gluten, your body's immune system is in overdrive. Not adhering to the diet leads to nasty outcomes...the possibility of cancer and a cascade-effect of other auto-immune diseases.

Step 4: Join a local support group. As good as online sites are, there is nothing that can replace face-to-face, human interaction. According to a Columbia University study, celiac patients reported better quality of life when they participated in face-to-face support groups compared to online support groups. Also, longer duration of face-to-face support generated a greater quality of life.

In contrast, they found lower quality of life reports when patients spent more time in online support groups. Source: http://bit.ly/23gBFDX

The gluten-free lifestyle requires hard work, dedication, commitment, and knowledge. The emotional and physical stress of a difficult lifestyle change piled on top of years [often decades] of ill-health, takes its toll. Every opportunity for a positive outcome needs to utilized.

Making the transition not easy for you, nor is it easy for your loved ones. Often times spouses, family & friends may not always understand exactly what you are going thru. They may not understand how vigilant you must be at keeping gluten out of your diet. In fact, unsupportive friends and family can be a huge detriment to your success; surrounding yourself positivity gives you the best environment to flourish.

One way to make it easier is to meet with others that walk in your shoes. They know where you've come from, they know what you're going through. They understand. Understanding is not something you always find in the gluten free lifestyle. You find out that you're not alone.

Connecting with others that share your same situation can give you a huge boost emotionally and physically. Many others experience the same trials and tribulations you do.

Grieving the Loss of Gluten - (Published in Gluten Intolerance Group of North America's Quarterly Magazine Celebrate Gluten-Free Winter 2013)http://bit.ly/GIGECW_Grief

Lack of Support From Family - (Published in Gluten Intolerance Group of North America's Quarterly Magazine Celebrate Gluten-Free Spring 2013)http://bit.ly/GIGECW_LackofSupport

Educating Family & Friends About Gluten-Free - A collection of resources I assembled over the years to educate others. Includes a Powerpoint presentation I did for our church.http://bit.ly/GIGECW_EducatingFamilyFriendsA Day in the Life: Living in a Mixed House - This is how we deal with having gluten in our house (I'm GF, my wife is not, but she's getting closer. YAY!)http://bit.ly/GIGECW_MixedHouse

GF Recipes can be found simply by searching the internet. There are so many bloggers and websites that offer GF recipes, it's amazing. A lot can be found on Facebook.

Here are just a few...

Recipes for most of our meals are posted on our group's website, as well as Peggy's [my wife] baked goods

You'll notice that many of our recipes are pretty simple. I really like taking simple ingredients and making amazing meals. It's truly a case of "The whole is greater than the sum of it's parts". We do a fair amount of entertaining and hosting of family events [because we both like to cook and because it's easier for us to control the food]. Our goal is to show that gluten-free food is not taste-free, crappy food. We are successful at it if I do say so myself.

Published lists of gluten-free products (electronic or paper), are easily outdated. Please keep in mind, you still need to read labels and sometimes verify GF status with manufacturers as ingredient lists can change - generally without notice. Use these lists/apps, as a guide, not as the sole means of determining the GF status of a food.A review of the top 10 GF apps:

The safety of oats for those on a gluten-free diet is a topic that has been debated for decades...and it still continues today. Please research this topic carefully before making your decision about oats.

What oats are used in gluten-free products? This article examines the difference between Purity Protocol Oats vs Mechanically/Optically Sorted oats…and why it matters.

"The safety of oats in individuals with celiac disease has been extensively investigated. Health Canada has reviewed the clinical evidence from numerous international studies and has concluded that the consumption of oats, uncontaminated with gluten from wheat, rye or barley, is safe for the vast majority of patients with celiac disease. A 2015 review entitled Celiac Disease and Gluten-Free Claims on Uncontaminated Oats is available on Health Canada’s web page Celiac Disease and Gluten-Free Claims on Uncontaminated Oats"

A special caution must also be delivered when it comes to oats. While oats in their natural form do not contain gluten, a small portion of patients with celiac disease react to oats in their pure, uncontaminated form. Some literature suggests that a protein in oats can trigger a similar response to gluten. Additionally, most mills that process oats also manufacture gluten-containing grains, making the chances of cross-contact inevitable.

The best advice we can offer is to take a great deal of care before introducing oats into your diet, which includes speaking with your healthcare provider about this dietary change. There is no way to determine if you will react, so proceed with caution. Verify that the oats you are using are “pure, uncontaminated,” “gluten-free,” or “certified gluten-free.” Experts recommend that up to 50g of dry gluten-free oats are considered safe. Check nutrition labels for portion size.

A large body of scientific evidence accumulated over more than 15 years has proven that oats are completely safe for the vast majority of celiac patients. Oats are not related to gluten-containing grains such as wheat, barley and rye. They don’t contain gluten, but rather proteins called avenins that are non-toxic and tolerated by most celiacs (perhaps less than 1% of celiac patients show a reaction to a large amount of oats in their diets).

Oats can be in a celiac’s diet provided they are selected from sources that guarantee a lack of cross-contact of wheat, rye or barley.Some who add oats to their diet may experience GI symptoms. This may actually be a result of the increased fiber that oats provide instead of a reaction to the oats themselves.

GF Processed Foods Links

Remember: Use published lists wisely. Always read the product ingredient list. If you're unsure, call the manufacturer [even from the store] and ask. GF status checks are generally the #1 type calls customer service reps get.

Also be conscious of the amount of processed foods you consume. Try to use them sparing or even better, not at all. Many in the GF community feel their best when all processed foods have been removed. Keep in mind, fine tuning your diet is a work in progress; you keep tweaking it so you can be at your best. Making the leap to gluten-free can be a daunting task, GF processed foods could be used as a stepping stone to help make that transition a bit easier. Everyone handles change differently. You need to figure out what works for you, what gives you best chance a success.

Tip: "When in doubt - leave it out". If you can't verify the status, put it back.

Tip: When checking the ingredient labels, use the 3-times rule. Read the label when you purchase a product, when you put it away in your pantry and again when you retrieve it to use. This will help minimize mistakes.

Dining out is also a minefield. All too often, restaurants don't understand the intricacies of properly preparing gluten-free food. The risk factor for gluten cross contact is generally quite high. However, with proper training food service professionals can successfully create delicious gluten-free food.

In many cases, the restaurants that do the best job have a family member that must be gluten-free. They understand the workings of a busy kitchen and educate their staff how to keep their guests [and family members] safe.

There are many in the gluten-free community that do not eat out at all. They simply won't risk their health for a meal out. This is a personal choice that we all have to make.

Tip: If you are new to gluten-free, refrain from eating out until have a good handle on the gluten-free diet at home. This minimizes the risk of further gluten exposure and gives your body time to recover.

Glutenfreeda - So Your Child Has Celiac: First Steps for the Classroom and Beyond: (added 8/21/16)http://bit.ly/2s4ftVOTwin Cities ROCK - Navigating School and Daycare with a Gluten Free Diet:http://bit.ly/2qLdxgW

Accommodating Children with Special Dietary Needs in the School Nutrition Programs: http://bit.ly/2sprBhB

Basic kitchen safety rules tell us that we need to separate ready-to-eat foods from raw meats, poultry, seafood, and eggs - and to use separate cutting boards and utensils to reduce the risk of food poisoning.

The same rules apply to gluten and gluten-free foods - they must be kept apart.

Even though a recipe may use gluten-free ingredients, the food must be appropriately prepared, so it remains gluten-free. If you are making meals for a gluten-free guest, you must be mindful of gluten cross-contact.

This guide will help you to understand and prevent gluten cross-contact.

Cross-Contact and Cross-Contamination Aren’t they the same thing?

We often use the term “gluten cross-contamination” when speaking with foodservice professionals about the preparation and handling of our gluten-free foods.

Cross-contact and cross-contamination appear to mean the same thing, but there is a subtle difference according to the FDA. Cross-contamination is a commonly used term for allergens. However, allergenic proteins are a normal component of food and not considered a contaminant. Based upon this definition, the agency began differentiating the conditions two years after the Food Safety Modernization Act (FSMA) of 2011 became law.

Let's explore the differences a bit more.

Cross-contamination happens when biological contaminates (bacteria or viruses) transfer from one food (or surface) to another.

Example: using the same cutting board & utensils for raw meats and ready to eat ingredients). Killing bacteria by heating the food to a recommended temperature makes the food safe to eat. Of course, we know this is not possible for gluten (or any allergenic proteins), however using improper terminology will give the wrong impression to a foodservice professional.

Cross-contact happens when allergenic proteins transfer from one food (or surface) to another.

Example: using the same cutting board to cut gluten and gluten-free bread. While we expect our food to be biologically contaminate-free, cross-contact is what we're concerned about with gluten.

Using the appropriate terminology with foodservice professionals will clearly and accurately describe our needs.

Gluten is the generic term for the proteins found in grains. The proteins found in wheat, barley, rye and commercial/mainstream oats (think Quaker Oats) are not acceptable for those following a gluten-free diet. Commercial or mainstream oats contain gluten due to how they're grown, harvested, transported and processed. Certified gluten-free oats are acceptable for some celiacs.

Where is gluten found?

Just about everywhere! Bread, pizza, cake, cookies, crackers, pasta, cereal, soups, sauces, beer - just to name a few foods. Many processed foods contain gluten in some form or another. It's very prevalent in the Standard American Diet.

What does gluten do?

Gluten provides the structure, the framework – it holds everything together. It gives that chewy texture that is desirable in many foods like bread & pizzas. It also makes a lot of people sick.

How much?

Think of gluten as a poison. How much arsenic would you like in your food? Very good, I thought you'd say zero.

Not only must the food be gluten-free, but it also must not come in contact with any gluten.

The concept of “a crumb will hurt you” is hard for people to understand because it involves minuscule amounts.

A study appearing at the International Celiac Symposium 2017 India, shows it's quite difficult to destroy gluten with temperatures used in customary cooking methods. And when it is destroyed [requires temperatures in excess of 392F for extended period of time], it's not safe to eat [not that gluten is safe to eat in its un-carbonized state...]

Flour particles can remain airborne for up to 24 hours. Only prepare gluten-free foods after a thorough cleaning and before gluten foods.

Research

The Amount of Accidental Gluten Consumption

A group of researchers from Immunogenx and Biomedal/Glutenostics recently published the results of their study - quantifying the amount of gluten being consumed by a selected group of patients with celiac disease. Indeed this was a first-of-its-kind, ground-breaking study. [See below for link to the actual study]

What did the study find?

People with celiac disease are inadvertently consuming more gluten than they realized.

Grief was the topic for our January meeting. I usually reserve these articles solely for our newsletters that are distributed to group members, however I felt this was important enough to share with everyone.

If you are struggling with grief and giving up gluten, I hope this of some help.

Thanks!

Al - GIG of ECW Branch Manager.

This article was published in Gluten Intolerance Group of North America's Quarterly Magazine Celebrate Gluten-Free Winter 2013

“Grief is a state of being that results from the recognition that the world that “should be” is different from the world “that is,” a world that is forever changed by a loss.” ~ Dr. Kenneth W. Matheson.

Dr. Kenneth Matheson's definition paints a very realistic picture for those who are gluten-free. Our entire world is changed forever once we take that first step in our gluten-free journey.

I think it's safe to say that every gluten-free person has ridden an emotional roller coaster on their journey to health. People suffer for years [6 – 10 years on average]; endure numerous doctor's office visits and usually walk away with more questions than answers. Frustrating to say the least. The result of finally getting answers to the on-going health issues brings an immediate sigh of relief, almost a giddiness. “WHEW, I finally know what's wrong with me!”

Not surprising, that euphoria quickly dissipates. The reality of the situation rears its ugly head - “What am I going eat and how am I going to handle this?” Convenience – gone. Care-free dining – adios. The joy of family gatherings - replaced with dread and worry. Things that took little or no thought - now rivals the logistics of a Mars Rover launch. Buckle up tight; this could be a bumpy ride.

Going gluten-free creates a massive jumble of emotions. The biggest and probably most complicated is grief.

In 1969, Dr. Elisabeth Kübler-Ross shared her experiences working with over 500 terminally ill patients in her well known book “On Death and Dying”. In this book she describes her Kübler-Ross Model [more commonly known as The Five Stages of Grief].

While terminally ill patients are using these concepts to deal with their diagnoses, it can be useful in any grief or loss situation - loss of a loved one, a divorce, a job, a pet, a food, an old lifestyle – any life-changing event.

“Suppressed grief suffocates, it rages within the breast, and is forced to multiply its strength.” ~ Ovid

The grieving process is important and necessary when someone experiences a significant loss. It's normal, it's natural, it's healthy. It's often hard to look beyond the big black wall that stands before you. As daunting as it is, dealing with it is a must. Repressing or suppressing grief is detrimental to our well-being resulting in a variety of emotional and physical symptoms (headaches, gastrointestinal problems, heart palpitations, etc.). Just as we are working towards a healthy gluten-free body, we must work on a healthy mind/emotional state as well.

Processing those thoughts, feelings, and emotions is intense work, but it helps us to accept what has happened. Grieving forces us to create a “new normal” out of our loss - whatever that new normal may be. We possess the power to create whatever we wish! Create wisely.

The grief cycle of Denial – Anger – Bargaining - Depression – Acceptance (DABDA) is unique as your fingerprint. Everyone deals with trauma differently. These stages are not rigid or sequential in their order of experience. We don't always move through the cycle in the described order, nor do we experience every stage. Transitioning can be fluid; subject to the ebb and flow of emotions. Do not be surprised if you find yourself visiting steps multiple times.

Let's take a closer look at each stage and see how it relates to the loss of our gluten-full lifestyle.

Denial– A protection mechanism. It helps us to mask the pain of reality while we figure out how to handle the loss.

“Celiac Disease? Bahhh, that doctor is wrong, just like all the others! His fancy book learnin' and medical tests – it's all bogus.”

“No, it's not gluten, it's the < insert any food besides gluten >.”

“I feel fine except for my headaches, depression, and maybe this itchy skin thing, and maybe frequent trips to the bathroom. Heck, our entire family is like this – it's normal.”

Anger – After the denial wears off; reality and pain come flooding in resulting in anger. We can be angry at something, someone, or even ourselves. Due to the years of misdiagnosis, the medical profession often takes the brunt of the aggression.

“Why wasn't this caught earlier? Damn doctors!”

“Gluten is in everything! What am I supposed to eat?”

“I want my old foods back. I can't have my favorite birthday cake. I can't go out with my friends. This sucks!”

“Gluten-free food is so expensive and it tastes terrible.”

Bargaining – The “What If” stage. We start asking questions of ourselves but also a higher spiritual power. We try to seek a compromise in an attempt to regain control of the situation.

“What if I only have gluten on my birthday? One piece of cake won't hurt me.”

“OK – just this one last cheat day...then I'll be good.”

“Please God, I'll do anything – just don't take away my pizza.”

Depression – The reality of the situation is becoming even more evident. We start to feel sadness, regret, fear, uncertainty. We are preparing ourselves for the “aftermath” of the things to come. We are in the early stages of accepting our new reality.

“My friends won't want to hang out with any more. I'm a social outcast.”

“Everybody else gets to eat anything they want and I can't.”

“My life is over, it will never be the same.”

“No one understands what I am going through.”

Acceptance – Not everyone reaches this stage. Some may not even be willing to call it “acceptance,” but a mere “willingness to move forward.” While they may sound similar, there is a difference between truly “owning it” and “just doing what it takes to get by.” When there is full acceptance, there's a sense of calm – a feeling that all will be OK.

“Gluten-free doesn't have to mean taste-free, crappy food. I can rock this..."

Embracement – No, this is not one of the original stages, but many in the gluten-free community have attained this level of "enlightenment." With embracement, we focus on the positives and benefits that the gluten-free lifestyle offers. We dive into our new lifestyle head first. We have found a purpose; educate, motivate, and advocate for others.

“Going gluten-free is making me eat healthier than I ever have. I am trying and loving all sorts of new foods. So many naturally GF foods.”

“People ask me to help them go gluten-free. It's great!”

“I wanted to help others, so I started a celiac/gluten-free support group in my town.”

Understand and accept the dynamics and process of grieving by reading/self education or by seeking professional counsel.

Be honest with yourself about your situation and your emotions.

Be courageous enough to share your feelings.

Find a sympathetic, understanding supporter or counselor who can provide feedback and input sorting out hurt, confusion, and feelings and move toward a resolution.

Reduce responsibilities and restricting commitments in order to minimize the stress load.

Don’t feel guilty about your grieving.

Attempt to engage in productive, contributory activities.

Endeavor to help to others who are grieving.

Local support groups have so much to offer when it comes to helping people deal with their new gluten-free life.

“We must embrace pain and burn it as fuel for our journey"~ Kenji Miyazawa

My Personal PathJust as we all react differently to gluten, we all uniquely handle the grieving process. I've been asked how I dealt with the emotions of abandoning gluten. Looking back, I don't feel I went through all of the stages.

Denial – I was sick and afraid, seeking answers. No denying something had to change.

Anger – Like so many, I was upset with the medical profession for a variety of reasons but realized I had to let that go.

Bargaining – Perhaps oddly, I didn't bargain. I was sick and wanted to feel better and would do anything to do so.

Depression – Minor, but I attributed it to being sick, not from giving up gluten.

Acceptance – I was ready to accept anything that made the problem go away.

Embracement – I'm all about that! I went all in by starting GIG of East Central Wisconsin.

Here are a few things the helped me attain gluten-freedom. Maybe they'll help you too?

Faith – While it may not be popular to talk about a higher spiritual power, it was an essential factor in my journey. Throughout the entire process, I didn't know why I was going through it, but I felt there was a reason for it. Later I would discover a passion and a purpose that didn't exist before; what a fantastic gift!

Knowledge - When I was sick, I turned to the internet searching for answers or clues. I find that the more I know about something, the less afraid I become. As the fear dissipates, I am better equipped to handle the situation.

Creativity – Even before I had to give up gluten I liked to cook. For me, cooking is a creative process. I enjoy the process of creating, whether it's a stained glass piece, a song on the guitar, or something new for dinner. Cooking offers me unique challenges of using unfamiliar ingredients to create innovative and exciting foods as well as re-create healthier versions of old favorites. I was determined not to let gluten win this challenge. Creativity to the rescue!

Support - I was lucky when I stumbled across gluten as a possibility of my problems. I stumbled upon a discussion board inhabited by a few people who helped me figure it all out. I had an online support system.

Not only did I have an online support system, but I was also fortunate enough to have a very supportive spouse, friends, and family. I don't think too many people outside of my wife thoroughly knew what I was going through, how scared I was or how sick I felt.

Having a support system to help you through those dark times is a tremendous advantage. They watch out for you and guide you. Even though I didn't want to socialize with others, my wife was wily enough to convince me to go hang out with our friends or attend family functions. Once I got there, it did boost my spirits and made me feel better. Perhaps my wife couldn't fully understand what I was going thru [like another gluten intolerant might], but she was a sympathetic ear when I needed to vent, a shoulder to lean on when I wasn't sure I was doing the right thing. When I did need another “insider's” perspective, I had the online people in my corner.

Stepping outside - As I was figuring out my issues, I realized that I was gaining knowledge that could be useful to others. This epiphany allowed me to step outside of myself and my problems. I would bristle with energy when helping others.

I started by contributing to the very same online discussion boards that helped me. There were others just starting out – just as lost, just as dazed and confused as I was. Starting a local support group took the process to another level.

While it may appear that I was ignoring my emotional needs, I feel “doing for others” helped me to understand & process the feelings I was having. I consider this aspect most vital to me. I found that my issues/situation was far from what others were experiencing. I found that I was quite lucky in the grand scheme of things. Pretty soon, things were lookin' pretty good in my household.

“Grief is the process that allows us to let go of that which was and be ready for that which is to come” ~ Therese A Rando

Final Thoughts

I don't think anyone likes to experience the pain of a loss. Unfortunately, it's a simple fact of life; there is no way to escape it – much like death and taxes. It's just part of the whole “Human Experience.”

Grief is messy, contradictory and confusing, but it gives us a way to make sense of our world and what we are experiencing. It's a way for us to regain control of our lives; it allows us to let go of our sick and unhealthy past and prepare for a better, healthier version that is waiting in the wings.

We will run into obstacles; we may stumble and fall on our journey. No one ever said the path to gluten-freedom was easy. The important thing is that we always, get back up and keep moving forward. We are in control and have the keys to unlock the door to our new life.

Lack of support from family members is something I hear about far too frequently. As disturbing as it is, it's one of the biggest hurdles those of us in the gluten-free community face. Sadly, this state of affairs is very common. In some cases, it goes beyond a simple lack of support, it crosses over into deliberate sabotage or willful "poisoning" of food. Those that love us the most, can give us the most trouble about our desire to be at our best. This type of behavior is not limited to the gluten free community; it's quite prevalent in many with chronic health issues. Fear and Denial and Insanity, oh my!

Why would someone that loves us not want to support us in anything we do - let alone something that might improve our health and quality of life? I suspect there are hundreds or thousands of different answers, unique as the fingerprints of those providing the answers. One of the most common opinions from GF community is fear.

Family members are afraid the health problems we are experiencing are closely connected to their own health struggles. If we are correct about the root cause of our troubles, that just might mean they have to go gluten-zero as well. In terms of celiac disease, it's hereditary, no ifs ands or buts. If you have celiac disease there is a 1 in 22 chance that your immediate family members could have it too, although they may not know it. When it comes to Non Celiac Gluten Sensitivity, gluten knows no family lines; it's just plain bad for everyone. Non Celiac Gluten Sensitivity affects a minimum of 6% of the population. Other medical professionals feel it's closer to 10% and as much as 30%-40%.

Denial is a very good friend of fear; you see them hanging together - a lot. Many family members are in denial - "Oh, I can't possibly have what you have - it's the _____________ ". To be honest, I wasn't any better, I used to blame the grease for my reflux after having a Double Quarter Pounder with Cheese from McD's .

While most family members would never say it out loud, some would: "You're crazy!" or "It's all in your head" or "You're a drama queen and just doing it for attention. Get over it!". For many, it is crazy to think that "The Staff of Life", Wonder Bread and his seductive sidekick SuzyQ would cause problems. True confessions, before I gave up gluten, I would've had those same thoughts, however I would've never verbalized them. I have since become a believer. Depending on how gluten affects you, people many not understand or believe how sick you are. All too often we hear "You don't look sick". Often times gluten affects us neurologically, which may not alter our physical appearance. Depression and cognitive issues are very common reactions to gluten consumption.

While I don't profess to have all the answers [or any for that matter], I do have some things that might help you cope with misguided, uncaring and selfish family members. Like my Father-In-Law used to say "You can pick your friends, you can't pick your relatives".

1) Be clear about why you are going gluten-free.

Have a plan, have goals, direction, be specific. "I am gluten-free because ____________". If you don't have a clear idea about why you are doing it, how are others supposed to understand? Without direction, it's easy to get lost. It's like going on a car trip without a map or a GPS. If you already have a definitive diagnosis - your goal is clear cut - GLUTEN ZERO FOR LIFE - no exceptions - ever. If your family won't take your word for it, show them your doctor's office notes and lab results.

Having a medical diagnosis generally adds credibility to your efforts. If you doing dietary trials on your own without a doctor's backing, you're flying without a net. This means you'll need extra resolve to say the course. Strap yourself in, it's going to be a bumpy ride.

2) Take gluten-free seriously.

Sometimes, we're our own worst enemy. To be successful at being gluten-zero, you need commitment and consistency. There's no crying in baseball and there is no cheating when it comes to gluten-zero; it's all or nothing. If you don't take it seriously, how can you expect others to take you seriously? Seriously. They get confused and frustrated by your actions. One time you're gluten-zero, the next time you're eating a BigMac. That type of behavior just doesn't play, your credibility goes right down the toilet [pun intended].

Be aware that your own loved ones may try to sabotage your efforts. They may try to tempt or persuade you back to gluten foods. How many times have you heard "Come on, just one bite won't hurt". How many times have they waved your favorite gluten filled food under your nose or even tried to force it into your mouth? Giving in to that type of behavior, only gives them control - and makes you sicker. Stand fast and hold your ground. Eventually they should tire of it because you won't give in.

If you are doing dietary trials to see if gluten might be causing problems, clearly define how your trial is going to work. I bring up trials because it may involve putting gluten back into your diet - this might confuse your family members. Make sure they know about your plan. If you think you can cover up cheating under the guise of "doing a trial", you won't get away with it too many times. Note: Before you start an extensive dietary trial, try to get tested first. In order for the tests to be as accurate as possible, you need to be consuming gluten. Click here for more info on testing.

If you are wondering, a trial should last three to six months at a minimum (six months is better). Depending on your symptoms, it may take a while for them to disappear, particularly neurological or skin [Dermatitis Herpetiformis] symptoms. Sometimes changes are subtle when you remove gluten, but very dramatic when you add it back in. I noticed changes on removal, but noticed larger changes when I went back on gluten. I started a 8 week gluten challenge to get blood work done and called it off after 5 days due to the symptoms. It was enough for me to determine that I will be gluten-zero for the rest of my days. I did have intestinal biopsies taken before I started dietary trials [yes, my testing sequence was reversed], no evidence of tissue damage was found. While I do not have a celiac disease diagnosis, a 4 month trial revealed gluten was an issue for me.

3) Communicate & Educate.

As simple as that sounds, I find it's not always done. Sit down with them and explain exactly why you want to explore gluten-freedom (see Tip #1). Be open about what you desire from them, so they know what to expect, they can't read your mind. Ask them for their help and co-operation; ask them to be a part of your team that makes you the best you you can be.

If we dig deep inside and look beyond the medical necessity of our food requests, we will find an emotional component. Our requests are an extension of ourselves. When our family and friends fail to acknowledge our food requests, we feel it as exclusion and rejection of us as a person. Maybe it is, maybe it isn't. Sometimes it's hard to tell what is inside the hearts and minds of our loved ones.

￼Opening up a line of communication is so important when it comes to resolution. Having a calm, heartfelt conversation about our health concerns and what it takes for us to be healthy and happy is the best chance we have at getting them to understand. It is up to us to kindly and respectfully educate them on how to do things correctly, no one else will do it.

I invite you to read this informative article on Confrontations vs Conversations from PsychCentral: http://bit.ly/1GQw2q1 It offers some great insights…

Confrontations are usually fueled by anger.Conversations are fueled by curiosity.

Confrontations have an aura of a judicial proceeding.Conversations frame a problem as something to be solved.

Confrontations have an element of moral superiority.Conversations happen between equals.

Confrontations shield the confronter from any responsibility.Conversations say “we’re in this together.

If you have trouble expressing yourself verbally, write a letter. Explain to them exactly how you feel, explain what you go thru on a daily basis, how you'd like to get your life back on track and how much it would mean to you to have their support.

Often times people tend to ridicule or dismiss things that they don't understand. If they are open to learning, find information from a reliable website and share it with them. Try not to overwhelm them with too much information. Once their eyes glaze over, you've lost them.

Let's face it, you might talk and educate until you are blue in the face, there's a possibility they still won't get it. Be confident in the fact that you gave it your best effort. Don't let your emotions consume you over their unwillingness to support you. As hard as it may be, you'll be better off if you just accept it and keep moving forward, focus on getting yourself healthy. Don't let them suck you into their darkness.

5) If support doesn't come to you, you go to the support

OK, so maybe your family is a poster-child for dysfunction; incapable of understanding what you're going thru, refusing to work with you on any level...you need to seek out those that understand and have walked in your shoes. Connecting with others that share similar experiences can make the difference between success and failure.

It's imperative to surround yourself with people who are positive and who are pursuing their own goals. Positivity is contagious - so is loneliness and depression - which would you rather be? Dr. Barbara Fredrickson found a Positivity Ratio of 3:1 a tipping point for human flourishing. This means for every negative feeling, thought, experience, we need a minimum of three positive (love, joy, gratitude, etc) in order to be happy. The ideal ratio is 5:1.

Support comes in many different ways. Today, there is a seemingly endless supply of online communities you can join. The great thing about online communities is that they're always open - ready to accept the latest rant or cheer your most recent accomplishment. If online is not your bailiwick, a local support group is the way to go. While online groups can do wonderful things, nothing beats face-to-face contact. It's hard to replace seeing the look on someone's face, the sound of their voice, and at times, the touch of a hand or hug.

When it comes to skin/hair/personal care products, gluten-free or gluten-full is a topic that has been debated for many years and continues yet today. It's an epic battle that rivals "Tastes Great - Less Filling". First, let us explore the science side of this.

Tastes Great! [Don't worry, it won't hurt you]

Several celiac experts (Dr. Peter Green - Celiac Disease Center at Columbia Univ., Dr. Stephano Guandalini - Univ. of Chicago Celiac Disease Center, Dr. Alessio Fasano - Univ. of Maryland Center for Celiac Research) say not to worry about gluten in hair/skin care products because the gluten must be consumed in order for it to cause a celiac reaction [villi damage]. Their reasoning, based on scientific evidence - size matters. The gluten proteins are simply too large to be absorbed by your body's largest organ - your skin.

Did you know - skin makes up about 16% of your body weight?

Cynthia Kupper, RD, Executive Director of the Gluten Intolerance Group of North America says:

Doug Schoon, President of Schoon Scientific (scientific consulting for the cosmetics industry) -

"There is no scientific evidence to support claims that gluten can absorb through the skin. The burden of proof should be on those who make these statements. They should provide credible scientific evidence to back this unlikely claim. What makes gluten unlikely to absorb? Substances with molecular weights (sizes) approaching 500 daltons are considered very poor skin penetrators because they are so large. Any bigger, they can’t possibly absorb into the skin, so they just sit on the surface. Gluten is huge — about 600 daltons — which is pretty monstrous; 15% larger than the theoretical maximum size. Also, gluten is a protein and so is skin. Protein is attracted to proteins, so gluten is likely to bond tightly to skin making it more difficult to penetrate. So it has two things going against it. This is just another example of an unfounded cosmetic myth used to frighten people. The same holds true for lipstick. There is little scientific study that supports the notion that gluten in lipstick is a problem for people with Celiac disease."Source:http://www.nailsmag.com/qa/1124/can-gluten-absorb-through-the-skin

Most gliadin proteins have molecular weights (MW's) of 16,000 to 50,000. Glutenin, however, consists of subunits of MW's 20,000 to 100,000 linked through intermolecular disulfide bonds into proteins with MW's of 50,000 to 2,000,000 or more.Source: http://naldc.nal.usda.gov/download/31131/PDF

Less Filling! [Hey that hurts!]

Even though science/medicine is telling us gluten cannot be absorbed through the skin - and thus not causing a reaction [ie villi damage], it's hard to ignore the countless number of celiacs/gluten sensitives that report they react to gluten in personal-care products. The reactions people experience are varied, many are topical (redness, itchy, burning, blisters] - due to gluten contact. Absorption is not needed for something like Contact Dermatitis.

Could it be that the experts are using intestinal damage as their only gauge for a reaction? It seems they are saying “If it doesn't cause intestinal damage, there's nothing to worry about.” Does that sound familiar? It should, because the gluten-free community went through this with Non Celiac Gluten Sensitivity (NCGS), where there is no intestinal damage. For years, experts told those with celiac-like symptoms and no villi damage that gluten was not the problem and NCGS didn't exist. Just because science fails to prove existence, doesn't mean that it fails to exist. Guess what - NCGS is now recognized. It does exist, who knew?

Could this be another instance where medicine hasn't caught up or it simply hasn't proven what patients have been experiencing? Not all medical professionals hold the status quo however...

Are they celiac reactions? Are there other allergies at play? Are the reactions irritant dermatitis or allergic dermatitis? Are they caused by gluten or some other ingredient in the product? Science has studied only a handful of the proteins in wheat, could there be other proteins causing problems?

So many questions, so few answers.

You have the power

Regardless of the questions, the science, or the experts – you are in control – you can choose to listen to the science or “listen” to what your body is telling you - and make the appropriate choices. If you continue to have unexplained issues or you if you don't feel comfortable using products with gluten, seek out gluten-free personal care products. You just might be surprised at the results!

Ingredients

Stearyldimoniumhydroxyprop-a-what?

If you thought reading packaged food ingredient labels was difficult, it's child's play compared to the shampoo bottle. You'll need a degree in Molecular Chemistry and a secret decoder ring.

Cosmetics are not covered under the FDA's Food allergen Labeling and Consumer Protection Act of 2004 (FALCPA). This means wheat, barley, rye and oats do not have to be clearly or plainly listed – instead, they use complex chemical names. Here are some ingredient lists that should help decipher those labels.

Something to keep in mind, the ingredient “fragrance”could be from a gluten source. Even unscented products have fragrance that's used to mask the chemical scent. Also fragerances are considered “trade secrets” and their components do not have to disclosed on the label or on the phone.

￼Inadvertent gluten ingestion from skin care products is a concern for those maintaining a gluten-zero lifestyle.

Two potential sources of ingestion are lotions and lipsticks. Tricia Thompson, MS, RD from Gluten-Free Watchdog and Thomas Grace decided to do gluten testing on two lotions and four lipsticks that contained gluten derived ingredients. This was a very small test, but I think the results will surprise you.

Sandwich and Competitive R5 ELISA test results on all six products returned less than 5 ppm and less than 10 ppm respectively. This means the products tested below detectable limits for each type of test.

Peg and I attended the March meeting of the Fox Valley Celiac Support Group. This meeting had representatives from 7 different area restaurants explaining their GF menu options and how they provide those options.

We also got to meet Andi and her husband from Manitowoc County Celiac Support Group. She's the one that tipped me off to this meeting! Thanks Andi and thanks FVCSG!

Doris, OwnerFell in to the GF options. Had lots of requests for GF. 2007 started a GF menu.

Changed menu around just for GF

Tell the staff if you are celiac/have allergy so the entire process is GF [properly address CC issues]. They are seeing customers eating GF for various reasons. Some are celiacs, some want to remove gluten because they feel better without, some want to eat healthier.

Have separate GF woks

An allergen order is clipped so staff knows this order must be handled differently. The remains in place thru the entire process.

Looking into getting special plates for GF food so it easy to recognize.

Trying to convert entire kitchen to GF, but they are running in to taste differences between NGF and GF dishes. They are trying to maintain the same taste and quality.

Joe Zehren, OwnerJoe's niece has CD. His sister was telling him how hard is was to eat out. They educated themselves on cross contamination issues, ingredients, etc. Also worked with Festival Foods. [they have knowledgable RDs on staff].

Dedicated friers

Color coded kitchen

Pizza toppings are taken from "clean" stock [not from the line]

Udi's buns and bread. They have special MONSTER sized loaves of bread! 2x - 3x larger than consumer bread!! They will sell buns, bread and pizza crusts. A loaf of bread is 10.72 - not really a bad deal considering. Pizza crusts are 2.25 - 2.50. Just call and ask for the kitchen manager.

Holidays and special family events are supposed to be filled with fun, laughter, and lightheartedness. For those of us with dietary requirements, often times it is met with dread and fear - with good reason.

Easter is only one week away. In many families, this means Easter Dinner at someone's house other than your own. Oh, the humanity...

~~

Not only was today Palm Sunday, but it was also First Communion in our church. The kitchen and fellowship hall was a-buzz with activity.

A family was holding their First Communion celebration in the fellowship hall, and everyone was bringing their contributions to the feast: deviled eggs, sliced ham, calico beans, sloppy joes, cakes, pies and desserts of all types. OH MY!

As I was watching all of this food pour in, I'm thinking...OMG, what a gluten-free nightmare...

Peggy [my wife] and I were in the kitchen cleaning up from communion, we were invited to take part in the celebratory feast. A family member knows I am gluten-free and said: "Oh gosh, I'm sorry, we don't have any gluten-free buns, but there's plenty of other things for you...". We politely declined, but really appreciated the heartfelt invitation.

Dining out in a restaurant is hard, but I think eating at someone's house or a hosted event is even harder. Most times the host or hostess is unfamiliar with the gluten-free diet and the concept of cross contact. Also, professionally trained chefs may not always know the ins-and-outs of a gluten-free diet.

It's all about education.

I don't blame friends, family and loved ones for not knowing about gluten-free. In fact, it's our [the gluten-free community] responsibility to impart that knowledge to them. If we don't do the education, who will?

In the end, if the people in our lives do not know how to accommodate our needs, we have no one else to blame but ourselves - to a certain degree.

Of course, some people just don't get it no matter how hard we try. If we've done our best to educate and it is just not sticking - at least we gave it our best shot. Sometimes family members present us with the most significant challenges.

The whole education process doesn't happen overnight. It takes time to re-wire decades-old engrained thoughts, actions, and behaviors. Sometimes - they will forget. It might be frustrating, for you and your students, but please remember: be kind and be patient. Remember, all of this is new to them - just as it was new to you. How long did it take you to adjust to your new normal? Don’t forget, you live with this 24x7x365 - probably not the case for your friends or family members.

During their metamorphosis, we have to make allowances [bring our own food, eat beforehand, etc.] until we are comfortable in their knowledge and abilities. Sadly, in some cases, that day may never come, despite our best efforts.

Since 2003, I've had a lot of "educational opportunities" with our friends and family. They now know and understand cross-contact, they will verify products/ingredients with me, even save the labels for me to inspect. My family and friends have been open to learning and making things safe for me. I connect with enough of the gluten-free community to know their behavior is not the norm. I am lucky...or...have I merely done an excellent job at educating them. I suspect it's a little of both.

Even though my family and friends are exceptional, I always bring at least one dish that I know is safe. Often times, I'll bring a second dish of the same food just for me that won't be put out for the masses. Also, we try to host as many family events as we can so we have as much control as possible.

I'd like to share some of the tools I've used to educate my friends and family members...

Gluten-Free Living - Explaining the Gluten-Free Diet - “While the holiday season should be an uplifting time of year, you may be dreading what your family has to say about your gluten-free diet. Sure, some loved ones support your dietary requirements, but others just don’t get it. In fact, some can be downright rude. How do you cope?”

GIG of ECW - Becoming a Gluten-Free Champion - “Today, there are a lot of resources available to those who are gluten-free. However, very few are designed to help you – the person who loves and cares for their gluten-free loved ones – the gluten-free champion.

You may not know it, but hiding beneath your street clothes is a superhero’s suit just waiting to be called into action.

We have a few tips and wealth of information in The Gluten-Free Champion’s Academy (see below) to help you make the leap.”BeyondCeliac.org: Seriously, Celiac Disease - This is an effort to educate non-diagnosed family members about the importance of getting tested. As we’ve [often] discussed, our own families can be the most difficult. We talk, we educate, we lead by example. Whatever we do, has no effect. They just don’t listen to us. Celiac disease is genetic, it runs in families. If one person in the family has it, there is a chance someone else in the family has it too (1 in 22 for a mother/father/sibling) - they may not even know it. It’s very possible they could have it, and not have any symptoms at all! Be aware a single negative test does not absolve a person for life. Celiac Disease can be triggered at any age - at any time. And so the struggle begins… Family members need to be tested, but getting them to do it is another story. This is where Seriously, Celiac Disease campaign comes in.

Living Gluten Free for Dummies by Danna Korn - I highly recommend this book. I see this book as a continuation or update of her Wheat free Worry Free book. It also goes a bit further in depth on certain subjects. There is no need to own both. Get this one if you don't have either book. Again, a great book to loan out.

Wheat Free Worry Free by Danna Korn - I got this book shortly after I went GF. Danna has a great persona in her books. Her style is very conversational, easy to read and fun! She includes humor in her books, which I think is a great idea. This is a great book to give to friends and loved ones. Often times they have a hard time understanding what you're going thru and why you have to do it. I lent this to my Mom, after that, she seemed to "get it"...or at least stopped questioning why I couldn't have ___________ ;).

A Celiac is Coming For Dinner - This is an excellent article from Caryn Taity about accommodating gluten-free guests. I have given this article to several family and friends.

GIG of ECW - Gluten-Free Diet Boot Camp - I often get asked for information on celiac disease and gluten-free. Either it's someone that is just starting to investigate gluten as the source of their health issues, or it's someone that is just newly diagnosed and looking at how/where to start. This is a collection of many different links.

GIG of ECW - A Day in the Life - Living in a Mixed House - This is an article I had written several years ago for this support group. It explains how we handle having gluten in the house. This is knowledge and experience I have gained over the years - much of it I've imparted to friends and family members.

So, You Want to Bake Gluten-Free Cookies - I created this for a few non-gluten-free people that wanted to bake GF cookies. We put together a GF Cookie Baking Kit: This document that included the recipes, the proper amount of GF flour for a specific amount of cookies. I cover the basics of gluten, gluten-free baking and cross contact - enough information so they can safely make GF cookies for someone. Note: You can tell by the logo, this was done before we became a Gluten Intolerance Group branch in May 2011.

Celiac Disease - Stuff you should know, but didn't know to ask - A presentation I did for our church. Since our Pastor is also gluten-free, I wanted to educate the other members. This presentation covers the history of celiac disease, what it is, what is gluten, is there a safe amount of gluten, cross-contact. Our church now has an entirely gluten-free communion. Since the host is gluten-free so there is no chance of cross-contact. Note: You can tell by the logo, this was done before we became a Gluten Intolerance Group branch in May 2011.

1 in 133 of normal, healthy people have Celiac Disease [most do not know it]. 1 in 56 of those that have related symptoms. 1 in 39 of those that have a 2nd degree relative [aunt or cousin] with Celiac Disease. 1 in 22 in those that have a 1st degree relative [parent or sibling] with Celiac Disease.

Would you like to see an even larger number? It estimated that Non-Celiac Gluten Sensitivity affects anywhere from 6% to 40% of the population.

6% of 5,686,986 = 341,219 people that gluten affects adversely.40% of 5,686,986 = 2,274,794 people that gluten affects adversely

That's a lot of people! Now, let's calculate the healthcare dollars chewed up because of gluten. Ooops, I don't have a calculator big enough for that task! "Hello NASA? Yeah, this is Al from GIG of ECW..."

This article was originally written and presented to the members of this support group in March 2009. I decided to correct some typographic errors and add some additional knowledge/information I didn't have when I originally wrote it.

This document draws upon my knowledge and experience I have acquired since going gluten-free in 2003. I have given you, the reader, a glimpse into how I personally carry out a gluten-free diet in a mixed house. I am not suggesting this is the only way or the best way; it's simply my way. Nothing more – nothing less. Please do not take any information found here as medical or professional advice. I'm not a doctor/nutritionist/dietitian, nor do I play one on TV. Before making any changes, discuss them with your healthcare team to make sure they are right for you.

My only intent is help others that may be struggling with the gluten-free lifestyle.

Alan KlapperichGIG of East Central WI - Branch Manager

Updated 6/24/2014

Not only do we have to be concerned about gluten ingredients that make up our food – we also have to be concerned about any gluten that may come into contact with our gluten free food.

Often times those that are new to the diet [or our friends and loved ones that don’t yet understand the diet], don’t fully understand the lengths we have to go thru to make sure our food isn’t contaminated. Yes, eye rolls and sighs are often the reactions we get. They think we’re being over cautious, anal retentive, drama queens…running around like Lucy van Pelt in A Charlie Brown Christmas “Ugh! I've been kissed by a dog! I have dog germs! Get hot water! Get some disinfectant! Get some Iodine!”

Gluten is gluten – it doesn’t matter how we come in contact with it. We need to be mindful of it.

GF or NGF [Non-Gluten-Free] Household – That is the question

Choosing what type of house to have depends on many factors. Economic, young children, percentage of members that require GF – just to name a few. I’m not going to defend or promote one way or the other. Every one must make the choice that fits them best. There’s no question that having a totally GF house would make things a lot easier on those that need to be GF. You have to weigh the practicalities of each side very carefully. However, as we continue down this gluten-free path, our house contains an ever dwindling supply of gluten. If we had kids, we might have chosen to be a 100% GF house right away.

Obviously those people that have a GF household are going to have an easier time of this. I’d venture to guess that, most people have a mixed house. I suspect that most celiac homes are mixed [meaning those that must be GF are, those that aren’t GF have gluten foods in the house]. I took a poll on one of the discussion boards I administrate. 77% (24) live in mixed houses.

I will say this – if you are having trouble getting your numbers down on your annual follow up blood work or still don’t feel well – you’d need to examine what is going on. How is gluten getting in? Are your food choices correct? Are you eating processed/packaged foods? Are you dining out? Could it be cross contamination at home? Did you check your meds/supplements? A number of things must be considered.

Those of us with a mixed house have our work cut out for us. We must always be on guard and always observant. Some people see this as a negative, because they don’t have a safe harbor from the rest of the gluten polluted world – that is completely understandable and desirable in certain circumstances. In my case, I don’t view it as a hardship, I view it as one of those “facts of life”. I feel it prepares me to deal with the rest of the world that doesn’t cater to me and my needs. Once you figure out a system, sharing a kitchen/pantry is do able – it just takes some planning – just like everything else with the GF lifestyle. “He who fails to plan, plans to fail”.

A very key element in having a mixed kitchen or 100% GF house – is having total buy-in of rule following from the others that live in the house. You’re really at their mercy in this. Sometimes this is not always easy – particularly with uncooperative spouses/significant others, kids [young ones] or yes, slobs. I’ve always said, it’s a good thing that I’m the one that’s GF, and not Peg. Yeah, truth be told, I can be teeny-tiny bit of a slob. In my defense, [I think Peg will back me up] when it comes to keeping the kitchen clean of food droppings, I think I do a pretty good job. I do my best to follow all the cross contamination rules just as she does. The kids – well – kids will be kids. As good as they can be, there’s going to be some mistakes made. The older kids, it might be easier to teach them what they need to do to keep things safe for their GF family member.

Regardless if you’re a mixed house or a 100% GF house, it’s always a good idea to give the kitchen/pantry a thorough cleaning when first starting out. Pull everything out of the fridge, cupboards, cabinets and drawers. Wash things down with warm soapy water – changing the water frequently. Gluten is not a living thing, so you can’t kill it – bleach does nothing. Heck as long as you’re at it, pull out the stove and fridge too - they can get pretty funky! For those with a mixed house – you’ll have to do this regularly if you don’t already do it.

OrganizationAs long as you have all the stuff pulled out of the cupboards and shelves, you will want to look at reorganizing them. You’ll want to have designated shelves, drawers and cupboards strictly for GF foods and for NGF foods. It’s best to keep the NGF items away from the GF items. It can also help to get some sealable containers so that you can place the GF food inside them – that way you won’t have to worry if something gets spilled or dropped on it. If you happen to have NGF flours – putting them in their own sealable container is also advisable. If you share pantry space, put GF items ABOVE gluten items. Since gluten rolls downhill, we don’t have to worry about “stuff” falling into it our GF foods. Also, make sure you clearly label GF and or NGF containers as such.

Also try to designate some counter or prep space strictly for GF items. Try to make a GF zone so that you always know you have a clean space to put things down. This can help a great deal when prepping meals.

Hardware

There are some utensils that you’ll want to replace – hands down, no matter what.

Toasters - if you’ve ever toasted glutened products in it – get yourself a new one and mark it so everyone knows that only GF items are to be put in it.

Toaster Ovens – if you’ve got one with removable racks, call the manufacturer and see if you can purchase another rack for it. We purchased a Kitchen Aid, as soon as I got home I called them and asked about another rack. The representative seemed somewhat perplexed as to why I wanted another rack. I explained – he sent me another one free of charge! Now that’s customer service!

Colanders/Strainers/Flour Sifters – Since pastas/gluten often get stuck in the small little holes and slits, cleaning them fully is a nightmare if not impossible. We have 2 colanders.

Wooden utensils/boards/rolling pins – Porous item can harbor gluten.

Cutting boards [plastic or wood] – due to the deep cuts and grooves, it’s best to get a new one.

Non-stick pots & pans – if there’s any cuts or scratches in the surface, replace it. It’s reported that Teflon is a porous surface and thus is not GF friendly. I have relaxed my views on non stick surfaces over time. As long as the coating does not have any cuts/scrapes/grooves – and as long as it’s completely clean – it's not a problem. I sent off an email to Tricia Thompson aka The Gluten Free Dietitian aka the author of The GF Nutrition Guide. Since she’s done many scientific studies, I thought she’d be a good one to ask about Teflon. Here’s what she said:

"In my opinion, if a teflon pan has scratched and starts to peel it should be thrown away for reasons far more important (probably) than the possibility it harbors gluten. Maybe it's just me but I don't like the idea of eating those little bits of teflon even if they are chemically inert!! As for the possibility that nonstick pans absorb gluten, I am not aware of any studies but find this hard to imagine. I am not an expert on Teflon but based on what I've read, Teflon is chemically inert, is not porous, and does not absorb food. " ~ Tricia Thompson, RD

There are only 1 or 2 pans that we use for gluten foods – I use them if I have to [which is rare].

Cast iron skillets – the “seasoning” develops from years of use is definitely something to stay away from. I’ve heard of some people getting them sandblasted or scrubbing them with steel wool and starting over.

Ceramic bake or cookware – yeah, that old pizza stone ain’t gonna cut it. Foil it, or hand it down to the gluten eaters.

Having some type of marking scheme is important. People have to know what’s used for GF and fair game for anything else. In our house we use the color red as much as possible for GF items. Spatulas, spoons, Tupperware, etc – all have the color red somewhere. We do have a GF wooden spatula – it’s Pampered Chef Brand – it’s the only one of it’s kind. For our toaster oven rack, I’ve colored all 4 corners red with a Sharpie permanent marker.

We have even trained frequent guests and family members on how our house functions and cross-contamination concerns.

Navigating

Figuring out how to navigate in this gluten filled world takes some doing. It requires a GPS – Gluten Position Service. Figuring out how to do it in your own kitchen is no exception.

Areas of concern

I’ve already discussed the utensils.

Counters – crumbs from making a NGF sandwich can be scattered and left behind. This is why it helps to have designated areas for GF and NGF. It just makes things a bit easier.

Dishtowels/sponges/dishrags – it helps to use paper towels because they’re disposable. If Peg is working with NGF products, she’ll clean first with paper towels then use a dishrag. After cleaning up she will switch out the dishrags with fresh ones. An average day in our house does not really generate much gluten usage.

Pets & Pet food – this is an easy one to overlook. If you’re feeding Rover NGF dog food, you might consider switching to a GF dog food [yes, pets do benefit from GF diets too!], or be very careful to wash your hands after feeding them. I have a friend that saw her testing numbers get worse – she finally pinned it down to bags of bird seed. That particular brand of bird seed contained wheat and she kept breathing in the dust [and swallowing it] when she was feeding the birds.

Kisses from loved ones – while this may sound strange, crumbs and residue can remain on hands/faces/mouths of loved ones for hours.

Microwave – how often do you put something in there and as foods heat up, things splatter around? These guys can be a real harbor for gluten pollution.

Grill grates – it might be time to replace the grates on the old weber. Of course you could try cleaning them, but sometimes that’s a nasty job in itself! If cleaning or replacing the grills are not an option – grill your GF items on tinfoil.

Hair/skin care products – if you happen to touch your hair, it’s possible for hairspray, etc to get on your hands and thus on your food or into your mouth. Most experts will say that topical connect from gluten will not cause a celiac reaction – it must be ingested in order for it cause problems. However, I know many people that do experience some type of skin reaction when they touch it. Is this a true celiac reaction or some other type of reaction – not really sure. This is a highly debated topic. Bottom line, if you react in any way – make sure the product is GF. Problem solved! For more information on GF cosmetics/hair care products, please check out: http://www.gigofecw.org/news/files/gf_cosmetics_hair_skin_care.php

Condiments (spreadable) – jars of peanut butter, mayo, butter, margarine, jelly, etc. These guys are huge cross-contamination magnets! Double dipping is strictly prohibited and a punishable offence! You’ll need to train people on the fine art of Gob Dropping or using a couple of spoons/knives to accomplish their task. Of course some of these products can be gotten in squeezable containers – this can help. If you think you can double dip just because you’re using GF products – think again… First of all, you won’t be able to tell if those crumbs are GF or NGF. Second of all, crumbs of any kind in those places are not good eats! GACK!

Shared bowls/bags of your favorite GF snack food - Think about when someone makes a monster sized NGF Dagwood sandwich, then they dig their gluteny paws into the potato chip bowl/bag. Bags of snacks must be poured out into an individual bowl.

Getting the hang of safely surviving in a mixed house will take some time. Let’s face it, you’ve probably lived NGF for a lot longer than GF. Old habits and actions take time retrain and rewire. You will make some mistakes starting out, count on that. I know, people are going to say “if you had GF house you wouldn’t have to worry about mistakes…”. Yeah, well, if you stay in bed, you don’t have to worry about getting hit by a car either. This is life, life isn’t perfect, so we do the best we can with the situation we have. After awhile you become conditioned – for better or worse. We were making lunch one day, Peg had her NGF bread on her plate already and she asked me to lay some sandwich meat on her bread since her hands were contaminated at that point. I pulled out a few pieces and I was starting and stopping with jerky movements. Peg thought I was messing around and asked what I was doing. I told her I was having trouble putting the meat on her NGF bread. I had become so conditioned to NOT do it, I had trouble doing it even when it was acceptable to do.

Spaghetti - Take cooking spaghetti for example…how do you test it to see if it’s done? No, throwing it on the wall to see if it sticks is not an option – at least in our house. Right – you taste it. We’ll that’s not possible if you’re cooking NGF pasta – however, old habits are hard to break! I know I’m not the only one that has put NGF pasta in my mouth to see if it was done then realized in horror what just happened. This was years ago, and I have since retrained myself not to do that. Now if I’m cooking pasta for Peg, I will do it by feel. Pinch it between my fingers – then have Peg taste it. Yes, I wash my hands after testing it.

I can hear you asking – “How do you keep straight which utensil to use?” It’s fairly easy actually. Since I’m left handed, I will put my GF pasta pot [yes I have my own pasta pot] on the left side of the stove. I will put Peg’s NGF pasta pot on the right side of the stove. I keep each utensil on the corresponding side. Also remember that my utensils are colored red – this helps in keeping things straight.

I can hear another question - “How do you stop gluten water from bubbling/splashing over into yours?” I stagger the time that I put in the GF and the NGF pasta. I’ll do mine first so it gets done first and thus drained first [into my GF colander]. If I have both going at the same time, I watch the heat to make sure it’s not splashing over the sides of the pot and I’m careful when I stir.

The pasta sauce is GF. Peg can add any NGF modifiers to her plate if she chooses.

This is pretty much how all of our meals are…the base of the meal is GF…then Peg can add whatever she wants. Most times it’s nothing NGF. Pastas, breads, pizzas, cereals/breakfast bars and some desserts – are about our only separate food items.

Baking – As I mentioned I have my own GF baking pans/tray/mixing paddles and mixing bowl [the bowl is stainless so it’s not a big deal anyway]. Peg still does some NGF baking [for fun and some profit]. Around the holidays it’s not uncommon for her to bake me some goodies then bake NGF goodies for herself or an order. Always, always always, the GF items are baked first. After she’s done with the GF baking, she’ll do the NGF baking – using the NGF equipment. It’s been reported that flour poofs around and and stays in the air for up to 24 hrs. Peg maintains that if you’re careful, you can keep the flour poofing to a minimum. She also maintains that GF flour poofs worse than NGF flour. Most generally I am not around when Peg has the NGF flour out, but I happened to watch her one time when she was scooping out the flour and mixing it – I did not see clouds of flour anywhere. The mixer is turned on slowly so flour is not spewed out all over. It would be interesting to do this under a black light to see if we could see it.

As an [unscientific] experiment, I placed several pieces of dark blue paper [sorry, no black was handy] around the kitchen before Peg started her non-gluten-free baking. No mixer was used in this experiment – all mixing was done by hand. Two pieces were sitting between 6” and 2 feet from the measuring/mixing/rollout area. The remaining piece was sitting about 2 feet away on the stove. The 2 pieces closest to the measuring/mixing/rollout area had a few small specks of non-gluten-free flour. The paper sitting on the stove, had no visible flour on it. I will say, that I have never seen or felt a coating of dust/flour after GF or NGF baking.

When NGF baking she clears off the counter so if flour does happen to poof around, it won’t settle on anything…other than the counter. When she’s done the counter is thoroughly cleaned and counter items put back after cleaning.

Hosting Family Events

In some cases family events tend to buffet type setups. Should this be the case, arrange all the gluten foods last in the line and away from the GF foods. It also helps explain to guests what foods are what and not mix the utensils. If you have things like BBQ’s [aka Sloppy Joes] or things that guests might have to build themselves – have 2 separate stations/containers for these -this way you can keep yours [the lion’s share] safe. It’s always smart to have smaller portions at the NGF station. Once it contaminated – you’re not going to want it – unless someone else in the house can eat it. Should you run out or low of the fixin’s at the NGF station you can always refill it from the GF container.

Another tip is to be the first thru the line so you know there’s been no cross contamination. There’s gotta be some perks to this GF thing, right?

Outside your KitchenCross-contamination also occurs outside your kitchen too. We’ve already discussed the cross-contamination issues and dining out. It also applies to our food and how it’s processed and packaged at the manufacturer. You’ve probably all seen the “Processed in the same facility that process wheat, peanuts, cat hair, whale blubber…”

According to Cynthia Kupper, RD [Director of Gluten Intolerance Group of North America] in her talk at HealthNow's Gluten Sensitivity/Celiac Forum 2010, the “Processed in..” and “Processed on...” statements are voluntary advisory statements designed for those with IgE [anaphylactic reaction] allergies. Many companies use the statements to “cover their backsides” legally. In reality they have no meaning for celiacs. She stated a group of registered dietitians knowledgeable in celiac/gluten-free; determined it would be reckless of them to suggest that the voluntary statements be used solely to determine the gluten-free status. If you have a true IgE reaction, you need to heed the warning. I highly recommend buying and watching HealthNow's 2010 Gluten Forum DVD. Well worth the $15.00.

Some companies are better than others when it comes to processing our foods. According to a 2005 report from the Inst.of Food Technologists - nearly all companies do follow “good manufacturing practices” [except for the Peanut Corp. of America], which the IFT concluded to be “effective in reducing or eliminating cross contamination”. While many processes take multiple steps to protect consumers, some don’t take any. ACK!!

FDA studies conducted from 1999 – 2005 revealed*:

About 55% of food processors identified and separated ingredients with allergens as raw materials.

About 80% took one or more steps to keep food processing equipment clean and prevent allergens from spreading to otherwise allergen-free foods. This includes: dedicated machinery, cleaning shared machinery between runs. Clean was the most common.

The most common source of cross-contamination comes from the build up of food residue on equipment even after it has been cleaned.

About 25% of the facilities were still likely to have allergen contamination in foods they produce. FDA states this figure should not be used as a gauge of overall cross-contamination in processed foods since these inspections were not chosen at random – they targeted facilities where the possibility of cross-contamination was the greatest.

Some companies when they first switch from an NGF run to a GF run [after the cleanup process was done] will donate a certain percentage of the product from the first run to a non-allergic organization in an effort to reduce the cross-contamination risk.

*The source of this information was obtained from: Department of Health and Human Services, Food and Drug Administration, Center for Food Safety and Applied Nutrition, Food Allergen Labeling and Consumer Protection Act of 2004, Public law 108-282, Report to the Committee on Health, Education, Labor, and Pensions, United States Senate and The Committee on Energy and Commerce, United States House of Representatives, July 2006. The original PDF located at: http://www.cfsan.fda.gov/~acrobat/alrgrep.pdf could no longer be found.

Summary

Choosing a 100% or mixed house based on many factors. It’s a personal choice, do what’s best for your situation.

Large percentage of homes are mixed.

To be successful, total buy-in from other household member to follow all the GF rules.

Updated 04/09/2019If you think determining the gluten-free status of food is difficult, try doing it with prescription medications! It's difficult at best to determine it by reading the ingredient label, and getting a pharmaceutical company to say if their product is gluten-free is like pulling teeth. Ugh...The Food Allergen Labeling Consumer Protection Act of 2004 [FALCPA] requires packaged food items to declare wheat and other allergens, but medications do not fall under the umbrella of the FDA's rulings.

Medications contain the active ingredient, but generally it needs to combined with something else - something called an excipient.

What's an excipient?

It's a pharmacological term used for an inert substance that acts as a carrier for the actual drug itself [the "active ingredient"]. Excipients are also used as a filler to bulk up formulations to ensure proper and accurate dosages and as a binder [pill form].For an extensive list of excipients, see glutenfreedrugs.com Excipients List; complete with descriptions.

Drugs.com has an excellent Inactive Ingredients page. Does not address gluten, but very in-depth explanations of each item.

Starches found in medications can include:

Corn (most common)

Caramel Coloring*

Cyclodextrins*

Dextrates*

Dextrin*

Dextrimaltose*

Maltodextrin*

Modified Starch*

Pre-gelatinized Modified Starch*

Pre-gelatinized Starch*

Sodium Starch Glycolate*

Starch*

Tapioca

Wheat

*These items need further investigation if the source of the starch is not specified. The ingredient in question could be derived from either a glutenous or non-glutenous plant source.

Since drug companies don't have to disclose source of the starch, there is no easy way to tell if certain ingredients are gluten-free. Calling the manufacturer is the only [and best] option.

”The bill intends to make it easier to identify gluten in prescription medications by requiring drug manufacturers to label medications with the list of ingredients, their source, and whether gluten is present.
The Celiac Disease Foundation has been working with Representative Ryan's staff since 2012 on the need for labeling of gluten in medication and is proud to endorse this bill. The Gluten in Medicine Disclosure Act of 2019 was introduced in the House of Representatives and referred to the House Committee on Energy and Commerce. If passed by the House, the bill will move forward for review by the Senate.
Read the full text of the Gluten in Medicine Disclosure Act of 2019" :http://bit.ly/2Gdi1qZ

Bills like this have been submitted since 2013, but they never saw the light of day. Please contact your senators and congressional representatives to let them know this bill is important to you.
Find your Senators and Congressional Representatives.

”This guidance is intended to convey to drug manufacturers FDA's recommendations on how 17 certain drug products should be labeled regarding gluten, a matter of interest to individuals with 18 celiac disease. Some individuals with celiac disease have faced difficulty when trying to 19 determine whether specific drug products contain gluten. Confronted by uncertainty, some 20 patients may forego important medication rather than risk an adverse reaction to gluten. Thus, 21 even if gluten is not present at levels that would harm a typical individual with celiac disease, 22 that individual may be harmed through uncertainty and lack of information.”

A good resource to start your GF meds search is http://glutenfreedrugs.com/ This site is maintained by Steve Plogsted, PharmD, BCNSP, CNSC and his pharmacy students at Columbus Children's Hospital, Columbus, OH.
As with all gluten-free lists - they should only be used as a guide - a starting point. Please verify the status of these products before you take them as ingredients can change.

Ashley N. Johnson, PharmD, BCPS, Angela N. Skaff, BS, PharmD Candidate, Lauren Senesac, PharmD Candidate. US Pharmacist. 2014;39(12):44-48
“Abstract: Celiac disease is a chronic condition involving an abnormal immune response to the ingestion of gluten-containing foods and products that commonly results in digestive symptoms, although other organ systems may be involved. The current mainstay of therapy is the avoidance of gluten-containing foods, beverages, and other products. However, if not equipped with the knowledge that medications, OTC products, supplements, and vitamins may contain gluten, patients with celiac disease may experience ongoing symptoms from continued ingestion of these products. Therefore, pharmacists play an essential role in educating patients and evaluating their medication use to ensure the optimal management of celiac disease.”

This is a great article, despite it's age [Jan. 2007]. If you are gluten-free and take medications, please take the time to read this article and educate yourself. Pharmacists also need to be educated about gluten-free medication as well. It has been my experience that GF knowledge is hit and miss [at least in my home town]. I printed this article and gave it to my pharmacist. Note: Due to the article's age, any brand name products that are stated as gluten-free, should no longer be considered GF. It's my opinion that any published list of gluten-free products, should not be blindly followed. Since manufacturers can change the ingredient list without notice, the product needs to be verified with each purchase.

DailyMed provides high quality information about marketed drugs. This information includes FDA labels (package inserts) and ingredient lists. This Web site provides health information providers and the public with a standard, comprehensive, up-to-date, look-up and download resource of medication content and labeling as found in medication package inserts. The National Library of Medicine (NLM) provides this as a public service and does not accept advertisements.

Pillbox – Provides a way to search medications by ingredient. The Pillbox website was developed to aid in the identification of unknown pills (oral solid dosage form medications). It combines images of pills with appearance and other information to enable users to visually search for and identify oral solid dosage form medications.

Once a pill has been identified, additional information is provided, including brand/generic name, ingredients, and the National Drug File identification number.

The Gluten in Medicine Disclosure Act has been endorsed by: American Celiac Disease Alliance, National Foundation for Celiac Awareness, Celiac Disease Foundation, Celiac Sprue Association, Gluten Intolerance Group, North American Society for Pediatric Gastroenterology, Hepatology and Nutrition, and the American College of Gastroenterology.

Suzy Cohen participated in Dr. Tom O'Bryan's Gluten Summit: A Grain of Truth. Her topic was "Hidden Sources of Gluten in Your Vitamins and Medications". She offered a lot of great information about navigating the world of medications. If you missed the free airing of these interviews, you can purchase access to all 29 amazing interviews. Suzy's DearPharmacist.com website contains a couple of links worth checking out.

This study looked at blood samples that were collected at Warren Air Force Base between 1948 and 1954. The researchers tested the samples for celiac disease and compared the results from those individuals collected recently. They found young people today are more than 4 times as likely to have celiac disease than the same age group in the 1950's.

Also noted in the study was that patients who did not know they had celiac disease were almost 4 times as likely to have died during the 45 years of follow up.